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Ethics, Ethical Human Research and Human Research Ethics Committees
Lindorff, Margaret
Non-medical research involves the same issues of justice, beneficence, and respect for persons that apply to non-medical research. It also may involve risk of harm to participants, and conflicts of interest for researchers. It is therefore not possible to argue that such research should be exempt from ethical review. This paper argues that…
Ethical Considerations in Human Movement Research.
Olivier, Steve
Highlights ethical issues for human subject research, identifying principles that form the construct of a code of research ethics and evaluating against this construct past human experimentation and current research in human movement studies. The efficacy of legislation and self-regulation is examined. Particular attention is given to the context…
Human Research Ethics Committees in Technical Universities
Koepsell, D.R.; Brinkman, W.P.; Pont, S.C.
Human research ethics has developed in both theory and practice mostly from experiences in medical research. Human participants, however, are used in a much broader range of research than ethics committees oversee, including both basic and applied research at technical universities. Although
Ethics in research with human beings: some issues about Psychology
Koller,Sílvia Helena
This paper examines some ethical issues in research with human beings, especially addressing the area of Psychology, such as the use of ethical codes; minimum risk; informed consent; debriefing; confidentiality; and ethical committees. It suggests ways for researchers to increase understanding and the proper use of the ethical codes, to guarantee their own protection, and to avoid abuses of power. Special attention is given to methodological issues related to ethics.
Ethics in research with human beings: some issues about psychology.
Koller, Sílvia Helena
This paper examines some ethical issues in research with human beings, especially addressing the area of Psychology, such as the use of ethical codes; minimum risk; informed consent; debriefing; confidentiality; and ethical committees. It suggests ways for researchers to increase understanding and the proper use of the ethical codes, to guarantee their own protection, and to avoid abuses of power. Special attention is given to methodological issues related to ethics.
Dooly, Melinda; Moore, Emilee; Vallejo, Claudia
Qualitative research, especially studies in educational contexts, often brings up questions of ethics because the study design involves human subjects, some of whom are under age (e.g. data collected in primary education classrooms). It is not always easy for young researchers to anticipate where ethical issues might emerge while designing their…
Ethical Issues in the Use of Humans for Research.
Bashaw, W. L.
The APA Ethical Principles, the University of Georgia policy, standard research texts, and research literature on specific methodologies, all in relation to ethical issues in human research, are discussed. The 10 APA principles state, in essence, that the investigator is responsible for what happens, that confidentiality and the protection of the…
Ethical considerations and challenges in first-in-human research.
Koonrungsesomboon, Nut; Laothavorn, Junjira; Karbwang, Juntra
First-in-human (FIH) research is a translational process to move a new potential therapy from bench to bedside. Major ethical challenges of an FIH trial arise because of the indeterminate nature of the risks involved and the controversial risk-benefit justification. Severe adverse events and death of subjects who participated in FIH research in the past have led to an increased attention on ethical considerations in the design and conduct of such research. Furthermore, novel therapies in the current decade, such as molecular-targeted, gene transfer, and pluripotent stem cells therapies, have led to numerous emerging ethical challenges or different ethical assessment and justification frameworks for FIH research. This article presents, discusses, and interlinks ethical considerations and challenges in FIH research through a review of related ethical principles and their application to each ethical issue with given examples. Possible solutions to address each ethical challenge are presented. The scope of this article focuses on 4 major ethical issues in FIH research: risk-benefit assessment and justification for the conduct of research, selection of a suitable target population, informed consent, and conflict of interest. Copyright © 2016 Elsevier Inc. All rights reserved.
Ethics of Research Involving Human Subjects in Criminal Justice
Bloomberg, Seth Allan; Wilkins, Leslie T.
Research in criminal justice involving human subjects has increased greatly, yet we have no code of ethics to guide such research. This paper argues that the primary purpose of a code should be protection of these research subjects, who are especially susceptible to mistreatment because of their prisoner status. (Author)
Ethical aspects of relationships between humans and research animals.
Herzog, Harold
People who work in biomedical and behavioral research settings sometimes form strong relationships with individual laboratory animals. Ethnographic studies indicate that it is common for these individuals to transform some animals from experimental subject to pet. Although theories of ethics that emphasize impartiality and justice have little to say about the moral implications of human-research animal bonds, caring-based ethical systems acknowledge the moral consequences and resulting psychological burdens of these relationships. Typically, albeit not always, animal care staff are more likely than researchers to experience the moral ambivalence associated with human-laboratory animal bonds. These bonds can result in conflict between technicians and investigators. Several ways that research institutions can help individuals cope with the ethical consequences of relationships with research animals include supporting the development of human-animal relationships in laboratories, giving animal care personnel an ethical voice through involvement in the institutional animal care and use committee decision process, publicly acknowledging the emotional and moral costs of human-laboratory animal relationships, and educating animal care staff about the purpose and possible benefits of research projects.
Ethics and psychological research
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Søndergaard, Dorte Marie
Human subjects and social relations are crucial in research psychologists' ethical considerations. Lists of ethical criteria - including how to anonymize data, avoid causing harm, handle asymmetries – are pivotal. A situated ethics inspired by new materialism and poststructuralism would, however,...
Ethics, politics, and human embryo stem cell research.
Macklin, R
Three reports on ethical aspects of research involving human embryonic stem cells were issued in the final months of 1999. Two were from governmental agencies or commissions: the National Institutes of Health and the National Bioethics Advisory Commission. The third report was issued by the American Association for the Advancement of Science and the Institute for Civil Society. All three reports endorse the use of federal funds for embryonic stem cell research, but other differences distinguish these reports. This article describes the differences and provides an ethical analysis of the main arguments.
The ethics of cloning and human embryo research.
Saran, Madeleine
The successful cloning experiments that led to Dolly in 1997 have raised many ethical and policy questions. This paper will focus on cloning research in human embryonic cells. The possible gains of the research will be judged against the moral issues of doing research on a person. This paper concludes that while the embryo has some moral status, its moral status is outweighed by the multitude of benefits that embryonic stem cell research will bring to humanity. Policy suggestions are given for dealing with this new and developing field of stem cell research.
Ethics in action: Approving and improving medical research with human subjects
de Jong, J.P.
In this thesis, Jean Philippe de Jong presents a new understanding of ethical oversight on medical research with human subjects and proposes that two philosophies for ethical oversight exist: '(dis)approving' and 'improving'. Systems for ethical oversight on medical research have been in place for many years, with Research Ethics Committees as their cornerstone. Although these oversight systems aim to ensure that the ethical quality of research is in order, they have been criticized for imped...
Ethnographic research with adolescent students: situated fieldwork ethics and ethical principles governing human research.
Hemmings, Annette
This paper explores ethical dilemmas in situated fieldwork ethics concerning ethnographic studies of adolescent students. While consequentialist and deontological ethics form the basis of the ethical stances shared by ethnographers and research ethics committees, the interpretation of those principles may diverge in school-based ethnography with adolescent students because of the particular role of the adult ethnographer vis-à-vis developmentally immature adolescents not held legally responsible for many of their actions. School ethnographers attempt to build trust with adolescent participants in order to learn about their hidden cultural worlds, which may involve activities that are very harmful to the youths involved. They face many difficult and sometimes unexpected choices, including whether to intervene and how to represent events and adolescents in published findings. Scenarios with examples drawn from research conducted in public high schools are used to illustrate and explicate dilemmas in formal research and latent insider/outsider roles and relations involving harmful adolescent behaviors, advocacy, and psychological trauma. Also examined are analytical procedures used to construct interpretations leading to representations of research participants in the resulting publication.
Online survey tools: ethical and methodological concerns of human research ethics committees.
Buchanan, Elizabeth A; Hvizdak, Erin E
A SURVEY OF 750 UNIVERSITY HUMAN Research Ethics Boards (HRECs) in the United States revealed that Internet research protocols involving online or Web surveys are the type most often reviewed (94% of respondents), indicating the growing prevalence of this methodology for academic research. Respondents indicated that the electronic and online nature of these survey data challenges traditional research ethics principles such as consent, risk, privacy, anonymity, confidentiality, and autonomy, and adds new methodological complexities surrounding data storage, security, sampling, and survey design. Interesting discrepancies surfaced among respondents regarding strengths and weaknesses within extant guidelines, which are highlighted throughout the paper. The paper concludes with considerations and suggestions towards consistent protocol review of online surveys to ensure appropriate human subjects protections in the face of emergent electronic tools and methodologies.
Ethics in action: Approving and improving medical research with human subjects
de Jong, J.P.
In this thesis, Jean Philippe de Jong presents a new understanding of ethical oversight on medical research with human subjects and proposes that two philosophies for ethical oversight exist: '(dis)approving' and 'improving'. Systems for ethical oversight on medical research have been in place for
A Selected Review of the Underpinnings of Ethics for Human Performance Technology Professionals--Part One: Key Ethical Theories and Research.
Dean, Peter J.
Provides a review of the key ethical theories and relevant empirical research relating to the practice of human performance technology. Topics addressed include ethics, morals, business ethics, ethics officers, empiricism versus normative ethical theory, consequentialism, utilitarianism, nonconsequentialism, Kohlberg model of cognitive moral…
Ethical Issues Affecting Human Participants in Community College Research
Wurtz, Keith
The increasing demand of constituents to conduct analyses in order to help inform the decision-making process has led to the need for Institutional Research (IR) guidelines for community college educators. One method of maintaining the quality of research conducted by IR staff is to include professional development about ethics. This article…
Heterogeneity of Human Research Ethics Committees and Research Governance Offices across Australia: An observational study
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Elisabeth De Smit
Full Text Available Background Conducting ethically grounded research is a fundamental facet of all investigations. Nevertheless, the administrative burdens of current ethics review are substantial, and calls have been made for a reduction in research waste. Aims To describe the heterogeneity in administration and documentation required by Human Research Ethics Committees (HRECs and Research Governance Offices (RGOs across Australia. Methods In establishing a nationwide study to investigate the molecular aetiology of Giant Cell Arteritis (GCA, for which archived pathological specimens from around Australia are being recruited, we identified variation across separate HREC and RGO requirements. Submission paperwork and correspondence from each collaborating site and its representative office for research were reviewed. This data was interrogated to evaluate differences in current guidelines. Results Twenty-five pathology departments across seven Australian States collaborated in this study. All states, except Victoria, employed a single ethics review model. There was discrepancy amongst HRECs as to which application process applied to our study: seven requested completion of a "National Ethics Application Form" and three a "Low Negligible Risk" form. Noticeable differences in guidelines included whether electronic submission was sufficient. There was variability in the total number of documents submitted (range five to 22 and panel review turnaround time (range nine to 136 days. Conclusion We demonstrate the challenges and illustrate the heavy workload involved in receiving widespread ethics and governance approval across Australia. We highlight the need to simplify, homogenise, and nationalise human ethics for non-clinical trial studies. Reducing unnecessary administration will enable investigators to achieve research aims more efficiently
National Human Research Ethics: A Preliminary Comparative Case Study of Germany, Great Britain, Romania, and Sweden
Gallagher, Bernard; Berman, Anne H; Bieganski, Justyna; Jones, Adele; Foca, Liliana; Raikes, Ben; Schiratzki, Johanna; Urban, Mirjam; Ullman, Sarah
Although international research is increasing in volume and importance, there remains a dearth of knowledge on similarities and differences in ?national human research ethics? (NHREs), that is, national ethical guidelines (NEGs), Institutional Review Boards (IRBs), and research stakeholder? ethical attitudes and behaviors (EABs). We begin to address this situation by reporting upon our experiences in conducting a multinational study into the mental health of children who had a parent/carer in...
Evolution of Attitudes in the Field of Human Research Ethics
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Hugo Escobar-Melo
Full Text Available The state of evolution of attitudes in a sample of 142 Medical Students at the Pontificia Universidad Javeriana in Bogota (at the beginning, middle and ending of their studies in the field of Human Research Ethics (HRE is analytically described. A complex scale of attitudes was used, with three components: affective, beliefs-related and behavioral, further divided into three theoretical categories taken from Bioethics: Subject-End/means- Dignity, Benefit and Justice. The relationship between the current medical education process and the attitudes regarding HRE in the sample are analyzed.A small trend towards progress in all categories and in all components of attitudes throughout medical education is described; neither the Benefit nor the Subject-End/means/Dignity categories evolve in a significant way; some significant differences were observed in the Justice category (beliefs and behavioral and in the Subject-End/means-Dignity category (beliefs component. The results allow for asking about the role of formation and evolution of those attitudes throughout the academic process. In conclusion, attitudes seem to be progressing relatively, without a decisive evolution.
Ethics of animal research in human disease remediation, its institutional teaching; and alternatives to animal experimentation.
Cheluvappa, Rajkumar; Scowen, Paul; Eri, Rajaraman
Animals have been used in research and teaching for a long time. However, clear ethical guidelines and pertinent legislation were instated only in the past few decades, even in developed countries with Judeo-Christian ethical roots. We compactly cover the basics of animal research ethics, ethical reviewing and compliance guidelines for animal experimentation across the developed world, "our" fundamentals of institutional animal research ethics teaching, and emerging alternatives to animal research. This treatise was meticulously constructed for scientists interested/involved in animal research. Herein, we discuss key animal ethics principles - Replacement/Reduction/Refinement. Despite similar undergirding principles across developed countries, ethical reviewing and compliance guidelines for animal experimentation vary. The chronology and evolution of mandatory institutional ethical reviewing of animal experimentation (in its pioneering nations) are summarised. This is followed by a concise rendition of the fundamentals of teaching animal research ethics in institutions. With the advent of newer methodologies in human cell-culturing, novel/emerging methods aim to minimise, if not avoid the usage of animals in experimentation. Relevant to this, we discuss key extant/emerging alternatives to animal use in research; including organs on chips, human-derived three-dimensional tissue models, human blood derivates, microdosing, and computer modelling of various hues. © 2017 The Authors. Pharmacology Research & Perspectives published by John Wiley & Sons Ltd, British Pharmacological Society and American Society for Pharmacology and Experimental Therapeutics.
The survey of clinical human experimentation research in ethical review of postgraduates students.
Xu, Yifan; Zhu, Zheng; Wang, Liyu
An anonymous questionnaire was used to investigate the status quo of ethics review of human subject experiments among postgraduate students in clinical practice with the main conclusions as follows: Human subject experiments make up a large ratio of clinical research; the construction of an ethics review has been initially formulated, but there exists a gap in ethics awareness between advisors and the postgraduates with the desperate need to receive ethics review. It is necessary to realize the importance of informed consent and to strengthen the strict supervision of placebo application.
Reporting of ethical protection in recent oral and maxillofacial surgery research involving human subjects.
Pitak-Arnnop, P; Sader, R; Hervé, C; Dhanuthai, K; Bertrand, J-Ch; Hemprich, A
This retrospective observational study investigated the frequency of reporting ethical approval and informed consent in recently published oral and maxillofacial surgery (OMS) research involving human subjects. All research involving human subjects published in the International Journal of Oral and Maxillofacial Surgery, Journal of Oral and Maxillofacial Surgery, British Journal of Oral and Maxillofacial Surgery, and Journal of Cranio-Maxillofacial Surgery during January to June 2005-2007 were analysed for disclosure of ethical approval by a local ethical committee and obtaining informed consent from the subjects. 534 articles were identified; ethical approval was documented in 118 (22%) and individual patient consent in 135 (25%). 355 reports (67%) did not include a statement on ethical approval or informed consent and only 74 reports (14%) disclosed statements of both. Ethical documentation in retrospective and observational studies was scant; 12% of randomised controlled trials and 38% of non-random trials did not report both of ethical protections. Most recent OMS publications involving humans failed to mention ethical review or subjects' consent. Authors must adhere to the international research ethics guidelines and journal instructions, while editors should play a gatekeeper role to protect research participants, uphold scientific integrity and maintain public trust in the experimental process and OMS profession.
Research Ethics Timeline (1932-Present)
... the font size, or print this page. Research Ethics Timeline (1932-Present) by David B. Resnik, J. ... Report becomes a key document in human research ethics regulations in the U.S. 1980 Congress passes the ...
National Human Research Ethics: A Preliminary Comparative Case Study of Germany, Great Britain, Romania, and Sweden.
Gallagher, Bernard; Berman, Anne H; Bieganski, Justyna; Jones, Adele D; Foca, Liliana; Raikes, Ben; Schiratzki, Johanna; Urban, Mirjam; Ullman, Sara
Although international research is increasing in volume and importance, there remains a dearth of knowledge on similarities and differences in "national human research ethics" (NHREs), that is, national ethical guidelines (NEGs), Institutional Review Boards (IRBs), and research stakeholder' ethical attitudes and behaviors (EABs). We begin to address this situation by reporting upon our experiences in conducting a multinational study into the mental health of children who had a parent/carer in prison. The study was conducted in 4 countries: Germany, Great Britain, Romania, and Sweden. Data on NHREs were gathered via a questionnaire survey, two ethics-related seminars, and ongoing contact between members of the research consortium. There was correspondence but even more so divergence between countries in the availability of NEGs and IRBs and in researcher' EABs. Differences in NHREs have implications particularly in terms of harmonization but also for ethical philosophy and practice and for research integrity.
Research ethics in Internet-enabled research: human subjects issues and methodological myopia.
Walther, Joseph B
As Internet resources are used more frequently for research on social and psychological behavior, concerns grow about whether characteristics of such research affect human subjects protections. Early efforts to address such concerns have done more to identify potential problems than to evaluate them or to seek solutions, leaving bodies charged with human subjects oversight in a quagmire. This article critiques some of these issues in light of the US Code of Federal Regulations' policies for the Protection of Human Subjects, and argues that some of the issues have no pertinence when examined in the context of common methodological approaches that previous commentators failed to consider. By separating applicable contexts from those that are not, and by identifying cases where subjects' characteristics are irrelevant and/or impossible to provide, oversight committees may be able to consider research applications more appropriately, and investigators may be less ethically bound to ascertain and demonstrate those characteristics.
The Ethics of Traditional Chinese and Western Herbal Medicine Research: Views of Researchers and Human Ethics Committees in Australia
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Caroline A. Smith
Full Text Available Despite the growth of traditional Chinese medicine (TCM and western herbal medicine (WHM research in Australia, little is known about how ethics committees (HRECs assess the ethics of TCM or WHM research. The objectives of this study were to examine the experiences of TCM and WHM researchers and HRECs with the evaluation of ethics applications. Two cross-sectional surveys were undertaken of HRECs and TCM and WHM researchers in Australia. Anonymous self-completion questionnaires were administered to 224 HRECs and 117 researchers. A response confirming involvement in TCM or WHM research applications was received from 20 HRECs and 42 researchers. The most frequent ethical issues identified by HRECs related to herbal products including information gaps relating to mode of action of herbal medicines and safety when combining herbal ingredients. Researchers concurred that they were frequently requested to provide additional information on multiple aspects including safety relating to the side effects of herbs and herb-drug interactions. Overall adherence with the principles of ethical conduct was high among TCM and WHM researchers although our study did identify the need for additional information regarding assessment of risk and risk management.
Navigating social and ethical challenges of biobanking for human microbiome research.
Chuong, Kim H; Hwang, David M; Tullis, D Elizabeth; Waters, Valerie J; Yau, Yvonne C W; Guttman, David S; O'Doherty, Kieran C
Biobanks are considered to be key infrastructures for research development and have generated a lot of debate about their ethical, legal and social implications (ELSI). While the focus has been on human genomic research, rapid advances in human microbiome research further complicate the debate. We draw on two cystic fibrosis biobanks in Toronto, Canada, to illustrate our points. The biobanks have been established to facilitate sample and data sharing for research into the link between disease progression and microbial dynamics in the lungs of pediatric and adult patients. We begin by providing an overview of some of the ELSI associated with human microbiome research, particularly on the implications for the broader society. We then discuss ethical considerations regarding the identifiability of samples biobanked for human microbiome research, and examine the issue of return of results and incidental findings. We argue that, for the purposes of research ethics oversight, human microbiome research samples should be treated with the same privacy considerations as human tissues samples. We also suggest that returning individual microbiome-related findings could provide a powerful clinical tool for care management, but highlight the need for a more grounded understanding of contextual factors that may be unique to human microbiome research. We revisit the ELSI of biobanking and consider the impact that human microbiome research might have. Our discussion focuses on identifiability of human microbiome research samples, and return of research results and incidental findings for clinical management.
Ethics education in research involving human beings in undergraduate medicine curriculum in Brazil.
Novaes, Maria Rita Garbi; Guilhem, Dirce; Barragan, Elena; Mennin, Stewart
The Brazilian national curriculum guidelines for undergraduate medicine courses inspired and influenced the groundwork for knowledge acquisition, skills development and the perception of ethical values in the context of professional conduct. The evaluation of ethics education in research involving human beings in undergraduate medicine curriculum in Brazil, both in courses with active learning processes and in those with traditional lecture learning methodologies. Curricula and teaching projects of 175 Brazilian medical schools were analyzed using a retrospective historical and descriptive exploratory cohort study. Thirty one medical schools were excluded from the study because of incomplete information or a refusal to participate. Active research for information from institutional sites and documents was guided by terms based on 69 DeCS/MeSH descriptors. Curriculum information was correlated with educational models of learning such as active learning methodologies, tutorial discussions with integrated curriculum into core modules, and traditional lecture learning methodologies for large classes organized by disciplines and reviewed by occurrence frequency of ethical themes and average hourly load per semester. Ninety-five medical schools used traditional learning methodologies. The ten most frequent ethical themes were: 1--ethics in research (26); 2--ethical procedures and advanced technology (46); 3--ethic-professional conduct (413). Over 80% of schools using active learning methodologies had between 50 and 100 hours of scheduled curriculum time devoted to ethical themes whereas more than 60% of traditional learning methodology schools devoted less than 50 hours in curriculum time to ethical themes. The data indicates that medical schools that employ more active learning methodologies provide more attention and time to ethical themes than schools with traditional discipline-based methodologies. Given the importance of ethical issues in contemporary medical
Schnaider, Taylor Brandão
This research explains ethics aspects of experiments in animals and human beings. It is considered to be a very important issue because it focuses on the mental, spiritual, social and physical well being of humans, without forgetting the animal rights. The majority of the international health research codes mentions that human research must be based on previous laboratory animal testing or on scientific evidences. The author is reviewing the ethics concepts in humans and animal testing. He refers to the international policies for medical research on human beings, Helsinki Declaration, 8.080 and 8.142 of the 1990 federal law, 9.974 of the 1995 federal law and also to the 196/96 Health Department Resolution. Then, a historical retrospective is drawn about the first attempt to establish regulation on animal testing, which happened in the mid of the 19th Century, in London. He also emphasizes that some of the criteria used at that time remains up to the present. The first ethics commission in animal testing was established in Sweeden in 1979 and in the United States in 1984. In Brazil, the ethics animal testing committees were established in the early 90s. Since May 1979, there is the 6.638 Federal Law which establishes regulations for the practice of animal use in research or teaching. This law is still waiting to be enforced. In addition to it, there are some drafts being analyzed by the Congress to regulate the use of animal for the purpose of teaching and researching. Finally the policies adopted by the Brazilian College of Animal Experiments are presented by the author. The professors, post-graduates, residents and medical students , as well as other students from health related courses enrolled in human and animal testing researches must be aware of ethics principles aiming to protect researchers, research subjects and the animals selected for scientific work.
The human rights context for ethical requirements for involving people with intellectual disability in medical research.
Iacono, T; Carling-Jenkins, R
The history of ethical guidelines addresses protection of human rights in the face of violations. Examples of such violations in research involving people with intellectual disabilities (ID) abound. We explore this history in an effort to understand the apparently stringent criteria for the inclusion of people with ID in research, and differences between medical and other research within a single jurisdiction. The history of the Helsinki Declaration and informed consent within medical research, and high-profile examples of ethical misconduct involving people with ID and other groups are reviewed. The UN Convention on the Rights of Persons with Disabilities is then examined for its research implications. This background is used to examine a current anomaly within an Australian context for the inclusion of people with ID without decisional capacity in medical versus other types of research. Ethical guidelines have often failed to protect the human rights of people with ID and other vulnerable groups. Contrasting requirements within an Australian jurisdiction for medical and other research would seem to have originated in early deference to medical authority for making decisions on behalf of patients. Stringent ethical requirements are likely to continue to challenge researchers in ID. A human rights perspective provides a framework for engaging both researchers and vulnerable participant groups. © 2012 The Authors. Journal of Intellectual Disability Research © 2012 Blackwell Publishing Ltd.
Teaching medical students to discern ethical problems in human clinical research studies.
Roberts, Laura Weiss; Warner, Teddy D; Green Hammond, Katherine A; Brody, Janet L; Kaminsky, Alexis; Roberts, Brian B
Investigators and institutional review boards are entrusted with ensuring the conduct of ethically sound human studies. Assessing ethical aspects of research protocols is a key skill in fulfilling this duty, yet no empirically validated method exists for preparing professionals to attain this skill. The authors performed a randomized controlled educational intervention, comparing a criteria-based learning method, a clinical-research- and experience-based learning method, and a control group. All 300 medical students enrolled at the University of New Mexico School of Medicine in 2001 were invited to participate. After a single half-hour educational session, a written posttest of ability to detect ethical problems in hypothetical protocol vignettes was administered. The authors analyzed responses to ten protocol vignettes that had been evaluated independently by experts. For each vignette, a global assessment of the perceived significance of ethical problems and the identification of specific ethical problems were evaluated. Eighty-three medical students (27%) volunteered: 50 (60%) were women and 55 (66%) were first- and second-year students. On global assessments, the criteria-focused group perceived ethical problems as more significant than did the other two groups (p problems, more closely resembling expert assessments. Unexpectedly, the group focused on clinical research participants identified fewer problems than did the control group (p human studies.
Ethics and methods for biological rhythm research on animals and human beings.
Portaluppi, Francesco; Smolensky, Michael H; Touitou, Yvan
This article updates the ethical standards and methods for the conduct of high-quality animal and human biological rhythm research, which should be especially useful for new investigators of the rhythms of life. The editors of Chronobiology International adhere to and endorse the Code of Conduct and Best Practice Guidelines of the Committee On Publication Ethics (COPE), which encourages communication of such updates at regular intervals in the journal. The journal accepts papers representing original work, no part of which was previously submitted for publication elsewhere, except as brief abstracts, as well as in-depth reviews. The majority of research papers published in Chronobiology International entails animal and human investigations. The editors and readers of the journal expect authors of submitted manuscripts to have made an important contribution to the research of biological rhythms and related phenomena using ethical methods/procedures and unbiased, accurate, and honest reporting of findings. Authors of scientific papers are required to declare all potential conflicts of interest. The journal and its editors endorse compliance of investigators to the Guide for the Care and Use of Laboratory Animals of the Institute for Laboratory Animal Research of the National Research Council, relating to the conduct of ethical research on laboratory and other animals, and the principles of the Declaration of Helsinki of the World Medical Association, relating to the conduct of ethical research on human beings. The peer review of manuscripts by Chronobiology International thus includes judgment as to whether or not the protocols and methods conform to ethical standards. Authors are expected to show mastery of the basic methods and procedures of biological rhythm research and proper statistical assessment of data, including the appropriate application of time series data analyses, as briefly reviewed in this article. The journal editors strive to consistently achieve
Where are human subjects in Big Data research? The emerging ethics divide
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Jacob Metcalf
Full Text Available There are growing discontinuities between the research practices of data science and established tools of research ethics regulation. Some of the core commitments of existing research ethics regulations, such as the distinction between research and practice, cannot be cleanly exported from biomedical research to data science research. Such discontinuities have led some data science practitioners and researchers to move toward rejecting ethics regulations outright. These shifts occur at the same time as a proposal for major revisions to the Common Rule—the primary regulation governing human-subjects research in the USA—is under consideration for the first time in decades. We contextualize these revisions in long-running complaints about regulation of social science research and argue data science should be understood as continuous with social sciences in this regard. The proposed regulations are more flexible and scalable to the methods of non-biomedical research, yet problematically largely exclude data science methods from human-subjects regulation, particularly uses of public datasets. The ethical frameworks for Big Data research are highly contested and in flux, and the potential harms of data science research are unpredictable. We examine several contentious cases of research harms in data science, including the 2014 Facebook emotional contagion study and the 2016 use of geographical data techniques to identify the pseudonymous artist Banksy. To address disputes about application of human-subjects research ethics in data science, critical data studies should offer a historically nuanced theory of "data subjectivity" responsive to the epistemic methods, harms and benefits of data science and commerce.
Research Ethics I: Responsible Conduct of Research (RCR)--Historical and Contemporary Issues Pertaining to Human and Animal Experimentation
Horner, Jennifer; Minifie, Fred D.
Purpose: In this series of articles--"Research Ethics I", "Research Ethics II", and "Research Ethics III"--the authors provide a comprehensive review of the 9 core domains for the responsible conduct of research (RCR) as articulated by the Office of Research Integrity. In "Research Ethics I", they present a historical overview of the evolution of…
Documentation of ethical conduct of human subject research published in Saudi medical journals.
Al-Gaai, E A; Hammami, M M; Al Eidan, M
We evaluated the documentation of ethical conduct (obtaining institutional review board approval and consent and following ethical guidelines) of human subject research studies published in Saudi Arabian medical journals between 1979 and 2007. Studies were classified as retrospective, prospective noninterventional, interventional or survey/interview. Of 1838 studies published in 286 journal issues of 11 Saudi Arabian medical journals, only 0.9% documented the ethical guidelines followed, with a significantly higher rate for studies published after year 2000 (1.7%). Of 821 studies requiring institutional review board approval, 8.6% documented obtaining the approval and informed consent, with a significantly higher rate for interventional studies (19.4%), post-year 2000 studies (19.7%) and studies performed outside Saudi Arabia (15.9%). The low documentation rate suggests editor's lack of rigor and/or investigators' ignorance of guidelines. The higher documentation rate after year 2000 suggests an ongoing improvement.
"The Project Cannot Be Approved in Its Current Form": Feminist Visual Research Meets the Human Research Ethics Committee
Pitt, Penelope
This article reflects on a university human research ethics committee's unease regarding a feminist visual pilot study within the field of education. The small exploratory study proposed to explore a migrant mother's production of her son's identity through her family photograph collection. The committee requested substantial…
Ethics and law in research with human biological samples: a new approach.
Petrini, Carlo
During the last century a large number of documents (regulations, ethical codes, treatises, declarations, conventions) were published on the subject of ethics and clinical trials, many of them focusing on the protection of research participants. More recently various proposals have been put forward to relax some of the constraints imposed on research by these documents and regulations. It is important to distinguish between risks deriving from direct interventions on human subjects and other types of risk. In Italy the Data Protection Authority has acted in the question of research using previously collected health data and biological samples to simplify the procedures regarding informed consent. The new approach may be of help to other researchers working outside Italy.
Some recent developments in the international guidelines on the ethics of research involving human subjects.
Levine, R J
We are in a period of reconsideration and revision of international ethical guidelines for the conduct of biomedical research involving human subjects. The proximate cause of much of this activity is the recent controversy over the ethics of the use of a placebo control in the clinical trials of the short-duration regimen of zidovudine for prevention of perinatal transmission of HIV infection, trials that were carried out in several so-called technologically developing countries. Critics of these trials claimed that they were in violation of Article II.3 of the Declaration of Helsinki, which states: "In any medical study, every patient--including those of a control group, if any--should be assured of the best proven diagnostic and therapeutic method. This does not exclude the use of inert placebo in studies where no proven diagnostic or therapeutic method exists." The critics claimed that since the "best proven ... method" is the 076 regimen, this is what must be provided to members of the control groups. Failure to do so, they asserted, was a serious breach of ethics. In response to this allegation, several major international and national agencies convened multidisciplinary groups to consider the ethics of multinational clinical research. The first thing they realized was that Article II.3 was in error in that it did not reflect contemporary ethical thinking. Moreover, it was routinely violated in research conducted in developed as well as in developing countries. What replaces this standard? The 1993 CIOMS International Ethical Guidelines for Biomedical Research Involving Human Subjects include several criteria for justification of research carried out in developing countries. Most importantly, the research must be responsive to the health needs and priorities of the host country. They also require that any therapeutic products developed in such research must be made "reasonably available" to residents of the host country. A new standard is emerging for
Ethical, legal and economic issues raised by the use of human tissue in postgenomic research.
Reymond, M A; Steinert, R; Escourrou, J; Fourtanier, G
Ethical, legal and economic framework issues concerning human samples, genetic data and bioresources are rapidly evolving. In most cases, international standards have not been defined. National legislations on the use and exploitation of human sample collections differ widely. Legislations relating to intellectual property rights, access to database information for public or private bodies, of national or foreign origin, are similarly diverse. Importation and exportation rules, concerning in particular data protection, biosafety and protection of individual rights, have not always been defined. This article makes a short assessment of the legal, ethical and economic framework in selected EC countries (Germany, France and UK), and compares them with the conditions in the USA. On the basis of the information collected, it is obvious that the use of human cells, tissues and organs in medical research has to be considered as a global, worldwide question. Such use has profound ethical, cultural and economic consequences not only in the country of origin, but also globally. Biotechnology and pharmaceutical companies conducting research with human samples are facing different framework conditions in the area of data protection, policy measures, economic support, exportation, etc., that already influence trade activities and investments of such firms at the international level. Over the 3 last years, a trend towards harmonization can be recognized: the World Health Organization has recognized the problems of postgenomic medical research as a priority. The OECD has created a taskforce on centers for biological resources. Biobanks are a common theme of the French and the German National Ethic Councils. A lack of international harmonization and consistency might not only present a challenge to biotechnology and pharmaceutical companies, but can also endanger the goals the laws and regulations seek to achieve. Copyright 2002 S. Karger AG, Basel
Methodological and ethical issues in research using social media: a metamethod of Human Papillomavirus vaccine studies.
Gustafson, Diana L; Woodworth, Claire F
Online content is a primary source of healthcare information for internet-using adults and a rich resource for health researchers. This paper explores the methodological and ethical issues of engaging in health research using social media. A metamethod was performed on systematically selected studies that used social media as a data source for exploring public awareness and beliefs about Human Papillomaviruses (HPV) and HPV vaccination. Seven electronic databases were searched using a variety of search terms identified for each of three concepts: social media, HPV vaccine, and research method. Abstracts were assessed for eligibility of inclusion; six studies met the eligibility criteria and were subjected to content analysis. A 10-item coding scheme was developed to assess the clarity, congruence and transparency of research design, epistemological and methodological underpinnings and ethical considerations. The designs of the six selected studies were sound, although most studies could have been more transparent about how they built in rigor to ensure the trustworthiness and credibility of findings. Statistical analysis that intended to measure trends and patterns did so without the benefit of randomized sampling and other design elements for ensuring generalizability or reproducibility of findings beyond the specified virtual community. Most researchers did not sufficiently engage virtual users in the research process or consider the risk of privacy incursion. Most studies did not seek ethical approval from an institutional research board or permission from host websites or web service providers. The metamethod exposed missed opportunities for using the dialogical character of social media as well as a lack of attention to the unique ethical issues inherent in operating in a virtual community where social boundaries and issues of public and private are ambiguous. This suggests the need for more self-conscious and ethical research practices when using social media
Overall Assessment of Human Research and Ethics Committees in the United Arab Emirates.
Abdulrahman, Mahera; Nair, Satish Chandrasekhar
Growing demand for human health research in the United Arab Emirates (UAE) has prompted the need to develop a robust research ethics oversight. Examination of the structure, function, and practices of the human research ethics committees (HRECs), followed by evaluation of standards for measuring research output, was conducted. Results indicate that among the HRECs, 90% followed International Council for Harmonization-Good Clinical Practice guidelines, 66.6% have been in operation for more than 5 years, 95% reviewed proposals within 8 weeks, and 56% reviewed for scientific merit apart from ethics. However, systems to recognize accomplishments of researchers, funding transparency, and adverse event reporting were deployed in less than 30% of all HRECs. Research was incorporated into the vision and mission statements of many (65%) organizations. Research publications, collaborations, and recognitions were used to measure research output and report key performance indicators. In spite, resources to generate research output such as dedicated budget (20%), support staff (20%), and continuous training and mentoring program for medical residents (15%) and HREC members (25%) were somehow lacking. HREC structure and operations in the UAE are similar to other regions of the world. Systems to conduct research and report outcomes are defined in the UAE. Regulatory legislation and allocation of resources to support the clinical research enterprise will not only help to meet growing demand for clinical trials but also transform the quality of patient care in the UAE. It is anticipated that the results of this study will benefit investigators, regulators, pharmaceutical sponsors, and the policy makers in the region.
Ethics and epidemiological research
African Journals Online (AJOL)
FROM THE COLLEGE OF MEDICINE. Ethics and epidemiological research. TCullinan. Introduction ... delines dealt mainly with the ethical issues sur- rounding clinical trials and other types of research involving .... ified school, a community might easily come to believe that all school boys were so infected. The principle of ...
Advancing Ethical Neuroscience Research.
Borah, B Rashmi; Strand, Nicolle K; Chillag, Kata L
As neuroscience research advances, researchers, clinicians, and other stakeholders will face a host of ethical challenges. The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has published two reports that provide recommendations on how to advance research endeavors ethically. The commission addressed, among other issues, how to prioritize different types of neuroscience research and how to include research participants who have impaired consent capacity. The Bioethics Commission's recommendations provide a foundation for ethical guidelines as neuroscience research advances and progresses. © 2016 American Medical Association. All Rights Reserved.
Computer science security research and human subjects: emerging considerations for research ethics boards.
Buchanan, Elizabeth; Aycock, John; Dexter, Scott; Dittrich, David; Hvizdak, Erin
This paper explores the growing concerns with computer science research, and in particular, computer security research and its relationship with the committees that review human subjects research. It offers cases that review boards are likely to confront, and provides a context for appropriate consideration of such research, as issues of bots, clouds, and worms enter the discourse of human subjects review.
Ethical issues in the translation of social neuroscience: a policy analysis of current guidelines for public dialogue in human research.
Zimmerman, Emma; Racine, Eric
Social neuroscience and its potential implications create an interesting case study for examining human research ethics policies on the topic of public communication of research. We reviewed mainstream national and international human research ethics guidelines and policies on issues of public communication of research. Our analysis relied on five thematic nets to capture the interactions between research and the public: public understanding, knowledge translation, public participation, social outcomes, and dual use. Coverage of these topics is sparse and inconsistent in mainstream policies and guidelines. We identify three options to address these gaps and analyze their strengths and weaknesses.
Directory of Open Access Journals (Sweden)
Mark Williams
Full Text Available In order to reflect on some ethical improprieties which I had committed during the data collection phase of an information systems research study, I conducted an heuristic and psychologically-oriented self-study. As part of this heuristic reflection, I engaged in a number of self dialogues in the form of a conversation between various characters. Reported in this paper is one of these dialogues, concerning broad issues of ethics and research and discussing the notion of wisdom, maturity, meaning, and virtue. Ethical considerations are always of primary importance, and I would assert that this is even more so when considering research investigating and using new media, such as the world wide web, in which acceptable ethical practices have yet to be established and consolidated.
Human cloning and embryo research: the 2003 John J. Conley Lecture on medical ethics.
George, Robert P
The author, a member of the U.S. President's Council on Bioethics, discusses ethical issues raised by human cloning, whether for purposes of bringing babies to birth or for research purposes. He first argues that every cloned human embryo is a new, distinct, and enduring organism, belonging to the species Homo sapiens, and directing its own development toward maturity. He then distinguishes between two types of capacities belonging to individual organisms belonging to this species, an immediately exerciseable capacity and a basic natural capacity that develops over time. He argues that it is the second type of capacity that is the ground for full moral respect, and that this capacity (and its concomitant degree of respect) belongs to cloned human embryos no less than to adult human beings. He then considers and rejects counter-arguments to his position, including the suggestion that the capacity of embryos is equivalent to the capacity of somatic cells, that full human rights are afforded only to human organisms with functioning brains, that the possibility of twinning diminishes the moral status of embryos, that the fact that people do not typically mourn the loss of early embryos implies that they have a diminished moral status, that the fact that early spontaneous abortions occur frequently diminishes the moral status of embryos, and that his arguments depend upon a concept of ensoulment. He concludes that if the moral status of cloned human embryos is equivalent to that of adults, then public policy should be based upon this assumption.
Research Ethics: Reforming Postgraduate Formation
Vallance, Roger J.
Research ethics is not only a matter of doing no harm, or even abiding by the guidelines of the Ethics Review Board of the institution. While these matters are important and legal requirements, there is much more at stake in discussions of research ethics. Research ethics establish the foundation upon which research rests. Taking the social…
Ethics of animal research in human disease remediation, its institutional teaching; and alternatives to animal experimentation
National Research Council Canada - National Science Library
Cheluvappa, Rajkumar; Scowen, Paul; Eri, Rajaraman
Animals have been used in research and teaching for a long time. However, clear ethical guidelines and pertinent legislation were instated only in the past few decades, even in developed countries with Judeo...
Research on ethics in two large Human Biomonitoring projects ECNIS and NewGeneris: a bottom up approach
Directory of Open Access Journals (Sweden)
Casteleyn Ludwine
Full Text Available Abstract Assessment of ethical aspects and authorization by ethics committees have become a major constraint for health research including human subjects. Ethical reference values often are extrapolated from clinical settings, where emphasis lies on decisional autonomy and protection of individual's privacy. The question rises if this set of values used in clinical research can be considered as relevant references for HBM research, which is at the basis of public health surveillance. Current and future research activities using human biomarkers are facing new challenges and expectancies on sensitive socio-ethical issues. Reflection is needed on the necessity to balance individual rights against public interest. In addition, many HBM research programs require international collaboration. Domestic legislation is not always easily applicable in international projects. Also, there seem to be considerable inconsistencies in ethical assessments of similar research activities between different countries and even within one country. All this is causing delay and putting the researcher in situations in which it is unclear how to act in accordance with necessary legal requirements. Therefore, analysis of ethical practices and their consequences for HBM research is needed. This analysis will be performed by a bottom-up approach, based on a methodology for comparative analysis of determinants in ethical reasoning, allowing taking into account different social, cultural, political and historical traditions, in view of safeguarding common EU values. Based on information collected in real life complexity, paradigm cases and virtual case scenarios will be developed and discussed with relevant stakeholders to openly discuss possible obstacles and to identify options for improvement in regulation. The material collected will allow developing an ethical framework which may constitute the basis for a more harmonized and consistent socio-ethical and legal approach
Ethical Issues in Teaching about Research Ethics.
Lucas, Keith B.; Lidstone, John G.
Describes experiences teaching ethical issues in the conduct of research over several semesters using a simulation of research into obedience by S. Milgram in the early 1960s. Describes students' reactions to the simulation at emotional and intellectual levels and discusses the ethical dilemma these reactions have created for teachers…
Human Dignity in Contemporary Ethics
African Journals Online (AJOL)
In this strictly academic book, David. Kirchhoffer processes the complex issues surrounding the concept of human dignity through a clearly defined ethical method. At the outset, he questions whether it is possible to use human dignity as a normative criterion, when empirical research has shown there is no evidence that an ...
Research ethics in physical education
Directory of Open Access Journals (Sweden)
Júlio César Schmitt Rocha
Full Text Available The objective here is to point out ethics in Physical Education research against a backdrop of individual and collective human conduct. Since Plato, the question of ethics in the Western world has been an incessant search for the virtues to harmonize personal and social wellbeing and for the absolute principles of conduct: Autonomy, Beneficence and Justice. Physical Education cannot exempt itself from these and its countless areas of research. In addition to the moral education that develops and solidifies within social groups, the characteristic of which is action on an individual level, we must also consider ethical principles such as those defended by the Physical Education World Manifesto and those that regulate the professional activities of Physical Education professionals. Irrespective of the area investigated, Research in Physical Education will always clash with institutionalized ethical principles enforced by ethics committees, councils and the values accepted by the researchers. Committees strive to preserve the integrity and dignity of the people enrolled on research studies while the researchers challenge the limits of knowledge at an uncomfortable frontier between the acceptable and the unacceptable within a given context of academic vision and needs.
Ethical suicide research: a survey of researchers.
Lakeman, Richard; Fitzgerald, Mary
Research is needed to better understand and respond effectively to people who are suicidal. Involving people who are suicidal in research poses some ethical and pragmatic problems. The ethical problems and difficulties in obtaining approval to involve people who are suicidal in research has contributed to the current paucity of research that explores the suicidal experience. To explore some of these problems, a web-based survey of suicide researchers was undertaken. Researchers identified from published reports were contacted by email and invited to participate in a web-based survey. Researchers were asked to describe any problems they encountered, how ethical problems were negotiated or resolved, and any advice received from human research ethics committees. The main problems identified were accessing the population, maintaining confidentiality, the extent of care owed by the researcher to participants, and the facilitation of support to participants. As with clinical practice, ethical research involving people who are suicidal involves a process of sensitive engagement, and careful consideration and remediation of risk.
Assessment by human research ethics committees of potential conflicts of interest arising from pharmaceutical sponsorship of clinical research.
Newcombe, J P; Kerridge, I H
Conflicts of interest arising from pharmaceutical industry sponsorship of clinical research have the potential to bias research outcomes and ultimately prejudice patient care. It is unknown how Australian Human Research Ethics Committees (HREC) assess and manage such conflicts of interest. We aimed to gain an understanding of how HREC approach the problem of potential conflicts of interest arising from pharmaceutical sponsorship of clinical research. We conducted a survey of HREC chairpersons in New South Wales. HREC vary widely in their approaches to conflicts of interest, including in their use of National Health and Medical Research Council guidelines, which were often misinterpreted or overlooked. Many committees rely primarily on researchers disclosing potential conflicts of interest, whereas a majority of HREC use disclosure to research participants as the primary tool for preventing and managing conflicts of interest. Almost no HREC place limitations on researcher relationships with pharmaceutical companies. These findings suggest reluctance on the part of HREC to regulate many potential conflicts of interest between researchers and pharmaceutical sponsors, which may arise from uncertainty regarding the meaning or significance of conflicts of interest in research, from ambiguity surrounding the role of HREC in assessing and managing conflicts of interest in research or from misinterpretation or ignorance of current National Health and Medical Research Council guidelines. Further review of policies and practices in this important area may prove beneficial in safeguarding clinical research and patient care while promoting continuing constructive engagement with the pharmaceutical industry.
DEFF Research Database (Denmark)
Tiidenberg, Katrin
This chapter joins the voices that consider research ethics to be a matter of situated, responsible judgment, rather than a matter of universal principles and rigid guidelines. When collecting data about or in digitally saturated contexts, we need to consciously choose between what is available...
Hazy Boundaries: Virtual Communities and Research Ethics
Directory of Open Access Journals (Sweden)
Helena Kantanen
Full Text Available This paper examines ethical issues specific to research into virtual communities. Drawing on an empirical case with online forums of education experts, we identify the following key issues: publicity versus privacy of the community; the definition of human subjects research; participant recruitment; informed consent; and ethical questions associated with observing virtual communities, and with reporting and disseminating research results. We maintain that different research cultures in different countries can present challenges when studying global forums. Acknowledging the ephemeral characteristics of Internet contexts, this paper argues that ethical considerations should be more case-based, instead of relying on one model for all solutions. We suggest that local ethics committees or institutional review boards could, with their expert knowledge of ethics, provide valuable support for researchers operating in the complex and dynamic terrain of Internet research, as well as in fields and research settings where an ethical review is not a standard part of the research process.
The ethical challenges of animal research.
Ferdowsian, Hope R; Gluck, John P
In 1966, Henry K. Beecher published an article entitled "Ethics and Clinical Research" in the New England Journal of Medicine, which cited examples of ethically problematic human research. His influential paper drew attention to common moral problems such as inadequate attention to informed consent, risks, and efforts to provide ethical justification. Beecher's paper provoked significant advancements in human research policies and practices. In this paper, we use an approach modeled after Beecher's 1966 paper to show that moral problems with animal research are similar to the problems Beecher described for human research. We describe cases that illustrate ethical deficiencies in the conduct of animal research, including inattention to the issue of consent or assent, incomplete surveys of the harms caused by specific protocols, inequitable burdens on research subjects in the absence of benefits to them, and insufficient efforts to provide ethical justification. We provide a set of recommendations to begin to address these deficits.
Conducting Ethical Business Education Research.
Blaszczynski, Carol
Defines ethical research and associated terms: codes of ethics, informed consent, privacy, confidentiality, and data treatment. Addresses issues in the dissemination of research results, such as plagiarism and authorship. (SK)
Human Science for Human Freedom? Piaget's Developmental Research and Foucault's Ethical Truth Games
Zhao, Guoping
The construction of the modern subject and the pursuit of human freedom and autonomy, as well as the practice of human science has been pivotal in the development of modern education. But for Foucault, the subject is only the effect of discourses and power-knowledge arrangements, and modern human science is part of the very arrangement that has…
Ethics of Cancer Gene Transfer Clinical Research.
Kimmelman, Jonathan
Translation of cancer gene transfer confronts many familiar-and some distinctive-ethical challenges. In what follows, I survey three major ethical dimensions of cancer gene transfer development. Subheading 1 centers on the ethics of planning, designing, and reporting animal studies. Subheading 2 describes basic elements of human subjects protection as pertaining to cancer gene transfer. In Subheading 3, I describe how cancer gene transfer researchers have obligations to downstream consumers of the evidence they produce.
Human Subjects Protections in Community-Engaged Research: A Research Ethics Framework1
Ross, Lainie Friedman; Loup, Allan; Nelson, Robert M.; Botkin, Jeffrey R.; Kost, Rhonda; Smith, George R.; Gehlert, Sarah
in the 30 years since the belmont Report, the role of the community in research has evolved and has taken on greater moral significance. Today, more and more translational research is being performed with the active engagement of individuals and communities rather than merely upon them. This engagement requires a critical examination of the range of risks that may arise when communities become partners in research. In attempting to provide such an examination, one must distinguish between established communities (groups that have their own organizational structure and leadership and exist regardless of the research) and unstructured groups (groups that may exist because of a shared trait but do not have defined leadership or internal cohesiveness). In order to participate in research as a community, unstructured groups must develop structure either by external means (by partnering with a Community-Based Organization) or by internal means (by empowering the group to organize and establish structure and leadership). When groups participate in research, one must consider risks to well-being due to process and outcomes. These risks may occur to the individual qua individual, but there are also risks that occur to the individual qua member of a group and also risks that occur to the group qua group. There are also risks to agency, both to the individual and the group. A 3-by-3 grid including 3 categories of risks (risks to well-being secondary to process, risks to well-being secondary to outcome and risks to agency) must be evaluated against the 3 distinct agents: individuals as individual participants, individuals as members of a group (both as participants and as non-participants) and to communities as a whole. This new framework for exploring the risks in community-engaged research can help academic researchers and community partners ensure the mutual respect that community-engaged research requires. PMID:20235860
Ethics in published brain computer interface research.
Specker Sullivan, Laura; Illes, Judy
Sophisticated signal processing has opened the doors to more research with human subjects than ever before. The increase in the use of human subjects in research comes with a need for increased human subjects protections. We quantified the presence or absence of ethics language in published reports of BCI studies that involved human subjects and qualitatively characterized ethics statements. Reports of BCI studies with human subjects that are published in neural engineering and engineering journals are anchored in the rationale of technological improvement. Ethics language is markedly absent, omitted from 31% of studies published in neural engineering journals and 59% of studies in biomedical engineering journals. As the integration of technological tools with the capacities of the mind deepens, explicit attention to ethical issues will ensure that broad human benefit is embraced and not eclipsed by technological exclusiveness. © 2017 IOP Publishing Ltd.
Evolution of ethics in clinical research and ethics committee
Directory of Open Access Journals (Sweden)
Nilay Kanti Das
Full Text Available Ethics are the moral values of human behavior and the principles which govern these values. The situation becomes challenging for a doctor when he assumes the role of researcher. The doctor-researcher has to serve both the roles and at times the zeal of an investigator has the potential to cloud the morality of the physician inside. It is very important to realize that exploiting the faith of patients is an offence that tantamount to a crime. Medical science is one discipline where the advancement of knowledge is hugely guided by research and mankind has benefitted from many experiments. However benefit and risk are the two faces of the same coin. Various unethical human experiments made us realize that the whims of researchers need to be reined and led to the evolution of the first guidelines for researcher, the Nuremberg code. Thereafter the Good Clinical Practice guidelines serve as the guiding doctrine of clinical research. The principles of ethics rest on the four pillars of autonomy, beneficence, justice, non-maleficence and recently two more pillars are added which includes, confidentiality and honesty. Ethics committees serve as a guardian of these principles. The multidisciplinary Ethics Committee ensures a competent review of the ethical aspects of the project proposal submitted and does it free from any bias or external influence. Ethical review of clinical trial applications follows a decentralized process in India, and requires Ethics Committee approval for each trial site. All Ethics committees have to be registered with Drug Controller General of India (DCGI without which they cannot approve any clinical trial protocol and has come into effect from 25th February 2013.
Foot, Hugh C.
Ethical codes of practice have largely ignored student project work, although there has been some discussion that it ought to be treated as a special case and handled by less stringent ethical review. However, if ethical review is about safeguarding the interests and rights of those who volunteer to participate, then there can be no case for…
Research ethics in the dynamic of scientific field: challenges in the building of guidelines for social sciences and humanities.
Guerriero, Iara Coelho Zito; Bosi, Maria Lúcia Magalhães
The development of guidelines on research ethics for social science and humanities (SSH) takes place in the scientific field, marked by disputes aimed at the establishment of hegemonic scientific standard. In Brazil, the National Health Council is responsible for approving these guidelines, which involve certain specificities. Based on the authors' experience in the SSH Working Group of the National Commission on Research Ethics (GT CHS / CONEP), this article presents the process of development of guidelines for SSH, and some its challenges: the distance between the statutory guarantee and the effective execution of guidelines; the biomedical hegemony and the marginal position of the SSH in the CEP / CONEP system; the inadequacy of the current resolution facing the research features in CHS; the use of the concept of risk in guidelines aimed at SSH in the health area. Some interfaces and tensions in the debate between scientific merit and ethical evaluation are also discussed. The analysis highlights important impasses and difficulties regarding inter-paradigmatic dialogue in health research, considered the characteristics of the different traditions, the CONEP's heavily relying on the positivist perspective and the defense of that paradigm hegemony.
Research Ethics: Institutional Review Board Oversight of Art Therapy Research
Deaver, Sarah P.
By having their research proposals reviewed and approved by Institutional Review Boards (IRBs), art therapists meet important ethical principles regarding responsibility to research participants. This article provides an overview of the history of human subjects protections in the United States; underlying ethical principles and their application…
Ethics in Higher Education Research
Parsell, Mitch; Ambler, Trudy; Jacenyik-Trawoger, Christa
Many educational researchers have experienced challenges in obtaining ethics approval. This article explores some of the reasons why this is the case, looking specifically at the participatory action research methodology. The authors' experience of seeking ethics approval for a project intended to introduce peer review as an enhancement process is…
Ethical issues in the collection, storage, and research use of human biological materials.
Meslin, Eric M; Quaid, Kimberly A
Human biological materials (HBMs) are samples of blood, DNA, organs and tissues commonly obtained during routine surgical procedures or through direct donation by an individual. This article reviews four of the most pressing issues arising from the collection, storage, and use of HBMs in research: current regulations governing research with human subjects, misuse of genetic information, economic factors, and public knowledge.
Ethical aspects of malaria control and research.
Jamrozik, Euzebiusz; de la Fuente-Núñez, Vânia; Reis, Andreas; Ringwald, Pascal; Selgelid, Michael J
Malaria currently causes more harm to human beings than any other parasitic disease, and disproportionally affects low-income populations. The ethical issues raised by efforts to control or eliminate malaria have received little explicit analysis, in comparison with other major diseases of poverty. While some ethical issues associated with malaria are similar to those that have been the subject of debate in the context of other infectious diseases, malaria also raises distinct ethical issues in virtue of its unique history, epidemiology, and biology. This paper provides preliminary ethical analyses of the especially salient issues of: (i) global health justice, (ii) universal access to malaria control initiatives, (iii) multidrug resistance, including artemisinin-based combination therapy (ACT) resistance, (iv) mandatory screening, (v) mass drug administration, (vi) benefits and risks of primaquine, and (vii) malaria in the context of blood donation and transfusion. Several ethical issues are also raised by past, present and future malaria research initiatives, in particular: (i) controlled infection studies, (ii) human landing catches, (iii) transmission-blocking vaccines, and (iv) genetically-modified mosquitoes. This article maps the terrain of these major ethical issues surrounding malaria control and elimination. Its objective is to motivate further research and discussion of ethical issues associated with malaria--and to assist health workers, researchers, and policy makers in pursuit of ethically sound malaria control practice and policy.
Hans Jonas' thought on the ethics of research on human subjects
African Journals Online (AJOL)
Dr Olaleye
The thinking and teachings of Hans Jonas was on the need for medical research to advance beyond the use animals for research and experimentations to research on human subjects. Jonas upholds the established view that medicine is an experimental science and that most medical advances are product of trial and error ...
Hans Jonas' thought on the ethics of research on human subjects ...
African Journals Online (AJOL)
The thinking and teachings of Hans Jonas was on the need for medical research to advance beyond the use animals for research and experimentations to research on human subjects. Jonas upholds the established view that medicine is an experimental science and that most medical advances are product of trial and error ...
Human tissues in a dish : The research and ethical implications of organoid technology
Bredenoord, Annelien L.|info:eu-repo/dai/nl/240834666; Clevers, Hans|info:eu-repo/dai/nl/07164282X; Knoblich, Juergen A.
The ability to generate human tissues in vitro from stem cells has raised enormous expectations among the biomedical research community, patients, and the general public. These organoids enable studies of normal development and disease and allow the testing of compounds directly on human tissue.
[Construction and validation of the "La Salle Instrument" to evaluate the ethical aspects in biomedical research on human beings].
Valdivia-Gómez, Gilberto Guzmán; Velasco-Jiménez, María Teresa; Domínguez-González, Alejandro; Meneses-Ruíz, Dulce María; Padilla-García, Raúl Amauri
Research projects must demonstrate not only a rigorous scientific methodology, but also the ethical aspects that require profound reflection of the reviewers. Current regulations establish criteria for research projects on human health, but many of these aspects are subjective. How can the evaluation of such projects be standardized? This is the main subject of the current project. This project comprises two phases. First, the design and construction of an instrument of evaluation based on the fundamental principles of bioethics, which are autonomy, beneficence, non-maleficence, and justice, and other aspects. The second phase consists of content validation through expert. During the phase of reviewing the instrument, it was necessary to make changes by adding, removing, or changing the concepts or criteria, which lead to the construction of the second version of the format. This new instrument was reviewed and analyzed by using the AGREE II instrument, and this version was validated by experts by greater than 95%. There are some recommendations to analyze the ethical aspects in research protocols involving human subjects, but they define the concepts and criteria to be evaluated. By presenting the criteria to be evaluated individually, the "La Salle instrument" allows the evaluation to be more objective and standardized.
Curricular approaches to research ethics training for psychiatric investigators.
Chen, Donna T
Training in research ethics is crucial for psychiatric investigators. Addressing ethical dimensions of human subjects research requires knowledge about the rules and norms governing research; sensitivity to ethical implications of actions; and skills in ethics problem solving. Investigators in training who are physicians have the additional challenge of developing identities as investigators that sometimes conflict with their identities as physicians. To propose a curriculum for psychiatric research ethics training. Review of literature on ethics education and presentation of a curricular approach to research ethics training for psychiatric investigators. Research ethics can be learned and should be taught. Involvement of active investigators in teaching research ethics is important. While core topics of psychiatric research ethics training have not yet been identified, there are available models from which to draw. Research ethics should be introduced early and integrated throughout the research training period. Lack of resources and institutional support can be obstacles to development of comprehensive research ethics curricula. Small-group, case-based discussion is best for teaching ethics problem-solving skills. Examples of teaching module ideas and a fully developed sample teaching module are presented. There is opportunity for creative models for teaching psychiatric research ethics. Work is needed to identify core topics, target pedagogical strategies to trainees at different levels, and develop evaluation methods.
IDRC's Advisory Committee on Research Ethics | IDRC ...
International Development Research Centre (IDRC) Digital Library (Canada)
ACRE does not assume the responsibility of ensuring that IDRC-supported research complies with local ethical standards. IDRC-supported research should incorporate the following principles: Respect for persons, animals, and the environment. When research involves human participants, it should respect the autonomy of ...
Research Award: Advisory Committee on Research Ethics
International Development Research Centre (IDRC) Digital Library (Canada)
respects persons, animals and the environment. • demonstrates appropriate measures to protect the welfare of participants. • promotes well‐being. • avoids causing harm. • treats people fairly, equitably, and with dignity. IDRC's Advisory Committee on Research Ethics (ACRE) promotes the principles of ethical research at.
Ethics and Medical Toxicology Research.
Sugarman, Jeremy; Stolbach, Andrew
Optimizing care in medical toxicology necessitates designing and conducting ethical research. Nevertheless, the context of medical toxicology can make clinical research ethically challenging for a variety of reasons: medical toxicology is typified by relative rare conditions; making precise and rapid diagnoses is often fraught with uncertainty; emergent and urgent clinical exigencies make consent difficult or impossible; and some exposures are stigmatized or related to illegal activities that can compromise collecting accurate data from patients. In this paper, we examine some of the ethical issues in medical toxicology research that are especially salient in effort to promote optimal research in the field. The particular issues to be addressed are as follows: (1) rare conditions and orphan agents, (2) randomization and control arms, (3) inclusion and exclusion criteria, (4) outcome measures, (5) consent, (6) confidentiality, (7) registries, (8) oversight, and (9) transparency and reporting. Thinking about these ethical issues prospectively will help researchers and clinicians appropriately navigate them.
Ethical decision making in the conduct of research: role of individual, contextual and organizational factors. Commentary on "Science, human nature, and a new paradigm for ethics education".
Langlais, Philip J
Despite the importance of scientific integrity to the well-being of society, recent findings suggest that training and mentoring in the responsible conduct of research are not very reliable or effective inhibitors of research misbehavior. Understanding how and why individual scientists decide to behave in ways that conform to or violate norms and standards of research is essential to the development of more effective training programs and the creation of more supportive environments. Scholars in business management, psychology, and other disciplines have identified many important factors that affect ethical behavior, including individual, contextual, and organizational factors. Surprisingly little research has been conducted to examine the role of these factors in either the development of ethical decision-making skills, or their applicability to ethical issues commonly encountered in research and other scholarly and professional activities. Interdisciplinary approaches combined with research and discipline relevant paradigms should greatly enhance understanding of the individual contextual and organizational factors involved in ethical and unethical research conduct. Such studies will inform and facilitate the development of more effective ethics education programs in the sciences and engineering professions.
Ethics of translational medical research.
Mandal, Jharna; Ponnambath, Dinoop Korol; Parija, Subhash Chandra
Translational research is the science of application of basic research knowledge to develop novel methods of improving public health outcome. This review briefly discusses the various phases involved and the hurdles faced in the translational pathway, how translational science originated, and the infrastructures consigned for translational research. Translational research also faces numerous diverse ethical issues similar to those observed in biomedical research. The various types of ethical issues faced whereas conducting translational research are discussed briefly in this review to help researchers identify and prevent unethical practices while conducting or regulating translational research.
Mental health research, ethics and multiculturalism.
Bailes, Marion J; Minas, I Harry; Klimidis, Steven
In this paper we examine ethical issues relevant to conducting mental health research with refugees and immigrant communities that have cultural orientations and social organisation that are substantially different to those of the broader Australian community, and we relate these issues to NH&MRC Guidelines. We describe the development and conduct of a mental health research project carried out recently in Melbourne with the Somali community, focusing on ethical principles involved, and relating these to the NH&MRC National Statement on Ethical Conduct in Research Involving Humans, and the NH&MRC document Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research. The experience of conducting mental health research with the Somali community highlights the fact that the principles of inclusion and benefit enunciated in the NH&MRC document Values and Ethics are particularly pertinent when conducting research with refugees and immigrant communities that are culturally distant to those of the broader Australian community. These principles inform issues of research design and consent, as well as guiding respectful engagement with the participating community and communication of the research findings.
Human stem cell ethics: beyond the embryo.
Sugarman, Jeremy
Human embryonic stem cell research has elicited powerful debates about the morality of destroying human embryos. However, there are important ethical issues related to stem cell research that are unrelated to embryo destruction. These include particular issues involving different types of cells used, the procurement of such cells, in vivo use of stem cells, intellectual property, and conflicts of interest.
[Scientific ethics of human cloning].
Valenzuela, Carlos Y
True cloning is fission, budding or other types of asexual reproduction. In humans it occurs in monozygote twinning. This type of cloning is ethically and religiously good. Human cloning can be performed by twinning (TWClo) or nuclear transfer (NTClo). Both methods need a zygote or a nuclear transferred cell, obtained in vitro (IVTec). They are under the IVTec ethics. IVTecs use humans (zygotes, embryos) as drugs or things; increase the risk of malformations; increase development and size of abnormalities and may cause long-term changes. Cloning for preserving extinct (or almost extinct) animals or humans when sexual reproduction is not possible is ethically valid. The previous selection of a phenotype in human cloning violates some ethical principles. NTClo for reproductive or therapeutic purposes is dangerous since it increases the risk for nucleotide or chromosome mutations, de-programming or re-programming errors, aging or malignancy of the embryo cells thus obtained.
Reflexiones sobre ética de investigación en seres humanos Reflections about research ethics in humans
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Alberto Perales
Full Text Available Con el objetivo de plantear la necesaria reflexión moral sobre la responsabilidad personal que asume cada investigador cuando realiza investigación científica en seres humanos, se presenta un ensayo de temática científica y moral, utilizando información de la literatura científica y ética pertinentes. En torno a los conceptos de ética heterónoma y ética autónoma, se plantea que, en última instancia y allende el consentimiento Informado y los cursos de adiestramiento sobre ética en investigación, la conducta del/de la investigador/a dependerá de su propia responsabilidad moral puesta a prueba en diversos contextos situacionales. Se utilizan dos modelos explicativos para comprender esta dinámica, el de normalidad en salud mental y el del desarrollo moral del hombre. Se concluye que el proceso de investigación en seres humanos constituye una actividad científica y moral que, dependiendo de diversas situaciones de conflicto de interés, pondrá siempre a prueba los controles morales del investigador.In order to propose the necessary moral reflection about the personal responsibility that each researcher assumes when he performs scientific research in human beings, an essay of moral and scientific themes is presented, using information from the relevant scientific and ethical literature. Around the concepts of heteronomous and autonomous ethics, it is proposed that ultimately and beyond informed consent and training courses on research ethics, the behavior of the researcher will depend on his/her own moral responsibility, tested in different situational contexts. Two explanatory models are used in order to understand this dynamic, the one of normality in mental health and the one of moral development of men. We conclude that the research process in human beings is a scientific and moral activity that, depending in various situations of conflicts of interest, will always test the researcher's moral controls.
Current outlook of ethics in research with human subjects Panorama atual da ética em pesquisa em seres humanos
Directory of Open Access Journals (Sweden)
Marystella Tomoe Takahashi
Full Text Available In the last decades, medical care has been increasingly permeated by the concept of evidence-based-medicine, in which clinical research plays a crucial role in establishing diagnostic and treatment. Following the improvements in clinical research, we have a growing concern and understanding that some ethical issues must be respected when the subjects are human beings. Research with human subjects relies on the principles of autonomy, beneficence, no maleficence and justice. Ordinance 196/96 from the National Health Board adds to the Brazilian legislation such renowned bioethical principles. AIM: Discuss the main ethical aspects involved in research with human subjects. MATERIALS AND METHODS: Critical analysis of Ordinance 196/96 and related literature. CONCLUSION: Ordinance 196/96 rules research with human subjects; nevertheless, it requires more in-depth discussions regarding the informed consent, use of placebo, research with vulnerable populations and research in developing countries.Nas últimas décadas, a medicina tem sido cada vez mais permeada pelo conceito de medicina baseada em evidências, na qual a pesquisa clínica possui papel crucial no estabelecimento de diretrizes diagnósticas e terapêuticas. Com o avanço da pesquisa clínica, surgiu a preocupação e o entendimento que certos padrões éticos devam ser obedecidos quando o objeto de estudo é o ser humano. A pesquisa em seres humanos baseia-se nos princípios da autonomia, beneficência, não maleficência e justiça. A Resolução 196/96 do Conselho Nacional de Saúde incorpora à legislação brasileira tais princípios bioéticos consagrados. OBJETIVO: Discutir os principais aspectos éticos envolvidos na pesquisa em seres humanos. MATERIAL E MÉTODO: Análise crítica da Resolução 196/96 do CNS e literatura correlata. CONCLUSÃO: A Resolução 196/96 do Conselho Nacional de Saúde regulamenta a experimentação em seres humanos, no entanto necessita de discussões mais
Enhancement, ethics and society: towards an empirical research agenda for the medical humanities and social sciences.
Pickersgill, Martyn; Hogle, Linda
For some time now, bioethicists have paid close attention to issues associated with 'enhancement'; specifically, the appropriate use and regulation of substances and artefacts understood by some to improve the functioning of human bodies beyond that associated with 'normal' function. Medical humanities scholars (aside from philosophers and lawyers) and social scientists have not been frequent participants in debates around enhancement, but could shine a bright light on the range of dilemmas and opportunities techniques of enhancement are purported to introduce. In this paper, we argue that empirical research into the notion and practice of enhancement is necessary and timely. Such work could fruitfully engage with-and further develop-existing conceptual repertoires within the medical humanities and social sciences in ways that would afford benefit to scholars in those disciplines. We maintain that empirical engagements could also provide important resources to bioethicists seeking to regulate new enhancements in ways that are sensitive to societal context and cultural difference. To this end, we outline an empirical agenda for the medical humanities and social sciences around enhancement, emphasising especially how science and technology studies could bring benefits to-and be benefitted by-research in this area. We also use the example of (pharmaceutical) cognitive enhancement to show how empirical studies of actual and likely enhancement practices can nuance resonant bioethical debates. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
An overview on ethical considerations in stem cell research in Iran and ethical recommendations: A review
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Tahmineh Farajkhoda
Full Text Available Conducting research on the stem cell lines might bring some worthy good to public. Human Stem Cells (hSCs research has provided opportunities for scientific progresses and new therapies, but some complex ethical matters should be noticed to ensure that stem cell research is carried out in an ethically appropriate manner. The aim of this review article is to discuss the importance of stem cell research, code of ethics for stem cell research in Iran and ethical recommendation. Generation of stem cells for research from human embryo or adult stem cells, saving, maintenance and using of them are the main ethical, legal and jurisprudence concerns in Iran. Concerns regarding human reproduction or human cloning, breach of human dignity, genetic manipulation and probability of tumorogenisity are observed in adult/somatic stem cells. Destruction of embryo to generate stem cell is an important matter in Iran. In this regards, obtaining stem cell from donated frozen embryos through infertility treatment that would be discarded is an acceptable solution in Iran for generation of embryo for research. Ethical, legal, and jurisprudence strategies for using adult/somatic stem cells are determination of ownership of stem cells, trade prohibition of human body, supervision on bio banks and information of Oversight Committee on Stem Cell Research. Recommendations to handle ethical issues for conducting stem cell research are well-designed studies, compliance codes of ethics in biomedical research (specifically codes of ethics on stem cell research, codes of ethics on clinical trials studies and codes of ethics on animals studies, appropriate collaboration with ethics committees and respecting of rights of participants (including both of human and animal rights in research. In addition, there is a necessity for extending global networks of bioethics for strengthening communications within organizations at both the regional and international level, strengthening
Ethical issues in stem cell research.
Lo, Bernard; Parham, Lindsay
Stem cell research offers great promise for understanding basic mechanisms of human development and differentiation, as well as the hope for new treatments for diseases such as diabetes, spinal cord injury, Parkinson's disease, and myocardial infarction. However, human stem cell (hSC) research also raises sharp ethical and political controversies. The derivation of pluripotent stem cell lines from oocytes and embryos is fraught with disputes about the onset of human personhood. The reprogramming of somatic cells to produce induced pluripotent stem cells avoids the ethical problems specific to embryonic stem cell research. In any hSC research, however, difficult dilemmas arise regarding sensitive downstream research, consent to donate materials for hSC research, early clinical trials of hSC therapies, and oversight of hSC research. These ethical and policy issues need to be discussed along with scientific challenges to ensure that stem cell research is carried out in an ethically appropriate manner. This article provides a critical analysis of these issues and how they are addressed in current policies.
Research on Ethical Agency : Symposium: empirical ethics in social work
dr Ed de Jonge
Symposium ESWRA - ECSWR 2016: empirical ethics in social work. Objective: ethical aspects of social work (esp. at home) Structure: cooperation of the research group of UAS Utrecht Netherlands with six regional welfare organizations Method: practice based ethics research Focus on professional
Situated ethics in collaborative research with children
DEFF Research Database (Denmark)
Chimirri, Niklas Alexander
That research ethics are to be renegotiated with the respective participants throughout the research process is a demand strongly promoted throughout feminist research. Ethics are to be re-situated according to the concrete interrelationships, including the power relations and positionings in play......, the agendas, accountabilities and responsibilities at stake. Due to the insight that human beings are situated beings, who have limited possibilities for understanding their respective being in the world, it emerges that a collaborative and yet conflictual exploration of joint becomings is both...... an epistemological as well as an ontological necessity. The paper discusses how a renegotiation of ethics is particularly difficult whilst engaging in a project investigating everyday media experiences of young children (aged 3-6) at a German day care centre. Albeit the children were explicitly considered co-researchers...
Ethical aspects in tissue research: thematic analysis of ethical statements to the research ethics committee.
Halkoaho, Arja; Pietilä, Anna-Maija; Vesalainen, Mari; Vähäkangas, Kirsi
Many studies have been published about ethics committees and the clarifications requested about the submitted applications. In Finland, ethics committees require a separate statement on ethical aspects of the research in applications to the ethics committee. However, little is known about how researchers consider the ethical aspects of their own studies. The data were collected from all the applications received by the official regional ethics committee in the Hospital District of Northern Savo during 2004-2009 (n = 688). These included a total of 56 studies involving research on tissue other than blood. The statements by the researchers about the ethics about their own research in these applications were analyzed by thematic content analysis under the following themes: recruitment, informed consent, risks and benefits, confidentiality and societal meaning. The researchers tended to describe recruitment and informed consent process very briefly. Usually these descriptions simply stated who the recruiter was and that written consent would be required. There was little information provided on the recruitment situation and on how the study recruiters would be informed. Although most of the studies were clinical, the possibility was hardly ever discussed that patients could fail to distinguish between care and research. The written guidelines, available on the webpages of the ethics committee, do not seem to be enough to help researchers achieve this goal. In addition to detailed guidelines for researchers, investigators need to be taught to appreciate the ethical aspects in their own studies.
Ethical aspects in tissue research: thematic analysis of ethical statements to the research ethics committee
Background Many studies have been published about ethics committees and the clarifications requested about the submitted applications. In Finland, ethics committees require a separate statement on ethical aspects of the research in applications to the ethics committee. However, little is known about how researchers consider the ethical aspects of their own studies. Methods The data were collected from all the applications received by the official regional ethics committee in the Hospital District of Northern Savo during 2004–2009 (n = 688). These included a total of 56 studies involving research on tissue other than blood. The statements by the researchers about the ethics about their own research in these applications were analyzed by thematic content analysis under the following themes: recruitment, informed consent, risks and benefits, confidentiality and societal meaning. Results The researchers tended to describe recruitment and informed consent process very briefly. Usually these descriptions simply stated who the recruiter was and that written consent would be required. There was little information provided on the recruitment situation and on how the study recruiters would be informed. Although most of the studies were clinical, the possibility was hardly ever discussed that patients could fail to distinguish between care and research. Conclusion The written guidelines, available on the webpages of the ethics committee, do not seem to be enough to help researchers achieve this goal. In addition to detailed guidelines for researchers, investigators need to be taught to appreciate the ethical aspects in their own studies. PMID:22873761
Enhancing capacity of research ethics review committees
African Journals Online (AJOL)
involving human subjects is relatively new in deve loping countries compared with the technologically advanced nations of .... geographical location. Training needs assessment and ethics sensitisation .... by an accredited ERC is necessary for researchers to obtain access to data held by the New Zealand health information.
From Research Ethics to Researching Ethics in an Online Specific Context
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Sari Östman
Full Text Available Along with the rise of a research field called digital humanities, online specific research ethics plays an especially significant role. Research on the same (Internet related topic is usually multidisciplinary, and understanding research ethics even inside the same research community may vary essentially. It is important to recognise and pay attention to online specific contexts as well as the researcher's own disciplinary background. In this empirical research paper, we will first sum up our previous work. Currently, we are working on a model which will help in positioning multidisciplinary researchers as ethical actors based on their research topics and backgrounds. In this article, we will present this model with a demonstration of the empirical data collected as part of a Finnish research project called Citizen Mindscapes, which concerns the cultures and history of Finnish discussion forums. We argue that in Finland, and probably also worldwide, online research ethics is in a phase where the focus should be moving from defining the ethical guidelines to studying research ethics as such. We will also discuss how the model will be further developed in an in-depth empirical process.
The Most Exciting Thing: Researcher Ethics and Personal Ethics
Ballard, Robert L.
This autoethnographic chapter explores the thoughts, feelings, desires, and ethical struggles of the author when he rode along with a patrol officer and saw a dead body. Drawing on communication ethics, the author problematizes his ethics, faith, identity, and personal desires. He learns it is important for researchers to consider their personal…
Towards an ethics safe harbor for global biomedical research
Dove, Edward S; Knoppers, Bartha M.; Zawati, Ma'n H
Although increasingly global, data-driven genomics and other ?omics?-focused research hold great promise for health discoveries, current research ethics review systems around the world challenge potential improvements in human health from such research. To overcome this challenge, we propose a ?Safe Harbor Framework for International Ethics Equivalency? that facilitates the harmonization of ethics review of specific types of data-driven international research projects while respecting globall...
A Research Agenda for Humanitarian Health Ethics
Hunt, Matthew; Schwartz, Lisa; Pringle, John; Boulanger, Renaud; Nouvet, Elysée; O'Mathúna, Dónal; Arya, Neil; Bernard, Carrie; Beukeboom, Carolyn; Calain, Philippe; de Laat, Sonya; Eckenwiler, Lisa; Elit, Laurie; Fraser, Veronique; Gillespie, Leigh-Anne; Johnson, Kirsten; Meagher, Rachel; Nixon, Stephanie; Olivier, Catherine; Pakes, Barry; Redwood-Campbell, Lynda; Reis, Andreas; Renaldi, Teuku; Singh, Jerome; Smith, Maxwell; Von Schreeb, Johan
This paper maps key research questions for humanitarian health ethics: the ethical dimensions of healthcare provision and public health activities during international responses to situations of humanitarian crisis. Development of this research agenda was initiated at the Humanitarian Health Ethics Forum (HHE Forum) convened in Hamilton, Canada in November 2012. The HHE Forum identified priority avenues for advancing policy and practice for ethics in humanitarian health action. The main topic areas examined were: experiences and perceptions of humanitarian health ethics; training and professional development initiatives for humanitarian health ethics; ethics support for humanitarian health workers; impact of policies and project structures on humanitarian health ethics; and theoretical frameworks and ethics lenses. Key research questions for each topic area are presented, as well as proposed strategies for advancing this research agenda. Pursuing the research agenda will help strengthen the ethical foundations of humanitarian health action. PMID:25687273
Research ethics committees: agents of research policy?
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Hemminki Elina
Full Text Available Abstract The purpose of this commentary is to describe the unintended effects ethics committees may have on research and to analyse the regulatory and administrative problems of clinical trials. Discussion The Finnish law makes an arbitrary distinction between medical research and other health research, and the European Union's directive for good clinical trials further differentiates drug trials. The starting point of current rules is that clinical trials are lesser in the interest of patients and society than routine health care. However, commercial interests are not considered unethical. The contrasting procedures in research and normal health care may tempt physicians to continue introducing innovations into practice by relying on unsystematic and uncontrolled observations. Tedious and bureaucratic rules may lead to the disappearance of trials initiated by researchers. Trying to accommodate the special legislative requirements for new drug trials into more complex interventions may result in poor designs with unreliable results and increased costs. Meanwhile, current legal requirements may undermine the morale of ethics committee members. Conclusion The aims and the quality of the work of ethics committees should be evaluated, and a reformulation of the EU directive on good clinical trials is needed. Ethical judgement should consider the specific circumstance of each trial, and ethics committees should not foster poor research for legal reasons.
Evolution of Ethics in Clinical Research and Ethics Committee
Nilay Kanti Das; Amrita Sil
Ethics are the moral values of human behavior and the principles which govern these values. The situation becomes challenging for a doctor when he assumes the role of researcher. The doctor-researcher has to serve both the roles and at times the zeal of an investigator has the potential to cloud the morality of the physician inside. It is very important to realize that exploiting the faith of patients is an offence that tantamount to a crime. Medical science is one discipline where the advanc...
The gap between law and ethics in human embryonic stem cell research: overcoming the effect of U.S. federal policy on research advances and public benefit.
Taylor, Patrick L
Key ethical issues arise in association with the conduct of stem cell research by research institutions in the United States. These ethical issues, summarized in detail, receive no adequate translation into federal laws or regulations, also described in this article. U.S. Federal policy takes a passive approach to these ethical issues, translating them simply into limitations on taxpayer funding, and foregoes scientific and ethical leadership while protecting intellectual property interests through a laissez faire approach to stem cell patents and licenses. Those patents and licenses, far from being scientifically and ethically neutral in effect, virtually prohibit commercially sponsored research that could otherwise be a realistic alternative to the federal funding gap. The lack of federal funding and related data-sharing principles, combined with the effect of U.S. patent policy, the lack of key agency guidance, and the proliferation of divergent state laws arising from the lack of Federal leadership, significantly impede ethical stem cell research in the United States, without coherently supporting any consensus ethical vision. Research institutions must themselves implement steps, described in the article, to integrate addressing ethical review with the many legal compliance issues U.S. federal and state laws create.
Ethics Research in Environmental Education | Jickling | Southern ...
African Journals Online (AJOL)
This paper takes a research orientation towards ethics and, in so doing, frames ethics as processes of inquiry and stories to be told. First, it explores ways that ethics might be 'reimagined', situated in everyday contexts and interpreted in ways that allow its stories to do work and invite readers and listeners to consider ethics.
Knowledge about the research and ethics committee at Makerere ...
African Journals Online (AJOL)
Background: All research involving human participants should be reviewed by a competent and independent institutional research and ethics committee. Research conducted at Makerere University College of Health Sciences should be subjected to a rigorous review process by the ethics committee in order to protect ...
Reporting ethics committee approval in public administration research.
Jordan, Sara R; Gray, Phillip W
While public administration research is thriving because of increased attention to social scientific rigor, lingering problems of methods and ethics remain. This article investigates the reporting of ethics approval within public administration publications. Beginning with an overview of ethics requirements regarding research with human participants, I turn to an examination of human participants protections for public administration research. Next, I present the findings of my analysis of articles published in the top five public administration journals over the period from 2000 to 2012, noting the incidences of ethics approval reporting as well as funding reporting. In explicating the importance of ethics reporting for public administration research, as it relates to replication, reputation, and vulnerable populations, I conclude with recommendations for increasing ethics approval reporting in public administration research.
Siegel, H S
Unethical conduct in research can be divided into five categories: 1) falsification of data, in which the researcher manipulates results, provides data without experimentation, or biases the results to give a false impression of their value; 2) failure to credit others (former colleagues, students, associates) for research results or ideas; 3) plagiarism, use of other's published material (ideas, graphs, or tabular data) without permission or credit; 4) conflicts of commitment or interest in which work or ownership in a private firm in some way conflicts or detracts from the duties to the institution they represent or allows private gain through the individual's employment at the institution; 5) biased experimental design or interpretation of data to support public or private groups that have provided financial support for research. Although none of these should be condoned or tolerated by the scientific community, the latter two are probably more serious, because they are insidious, hard to prove, and, in the long run, result in the loss of public confidence in science.
Ethics in Research on Learning: Dialectics of Praxis and Praxeology
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SungWon Hwang
Full Text Available Qualitative social research designed to develop ways of understanding and explaining lived experience of human beings is a reflexive human endeavor. It is reflexive in that as researchers attempt to better understand their participants, they also come to better understand themselves. Consequently, research ethics itself becomes an ethical project, for it pertains to participant and researcher at the same time: Both are subjects, knower and known. Particularly in case of research on learning, reflexivity arises from the fact that the research itself constitutes learning about learning. How is ethics in research on learning reflexive of, in its praxis and praxeology, ongoing events and changes of the human learning? In this study, from our experience of conducting a project designed to inquire into "learning in unfamiliar environments," we develop pertinent ethical issues through a dialectical process—not unlike that used by G.W.F. HEGEL in Phenomenology of Spirit—grounded in our lived experience and developed in three theoretical claims concerning a praxeology of ethics. First, ethics is an ongoing historical event; second, ethics is based on the communicative praxis of material bodies; and third, ethics involves the creation of new communicative configurations. We conclude that ethics is grounded in a fundamental answerability of human beings for their actions, which requires communicative action that itself is a dialectical process in opening up possibilities for acting in an answerable manner. URN: urn:nbn:de:0114-fqs0501198
Ethics and the practice of qualitative research
DEFF Research Database (Denmark)
Shaw, Ian Frank
Ethics and the practice of qualitative research? Qualitative Social Work 7 (4): 400-414. Reprinted......Ethics and the practice of qualitative research? Qualitative Social Work 7 (4): 400-414. Reprinted...
Ethical Considerations in Conducting Family Violence Research
Berry, Vashti Louise
There is a lack of procedure in the UK guiding social researchers faced with ethical questions. In particular, investigators concerned with family violence and its effects on children face some of the most complex ethical dilemmas in social research and there is a need for greater transparency of ethical procedures. \\ud \\ud This paper summarizes some key ethical principles guiding social research focused on children, and the decisions that researchers face when conducting studies in the area ...
Ethical issues in palliative care research.
de Raeve, L
Much has been written about the ethics of experimental research upon human subjects, particularly where such subjects can be said to be in a vulnerable position in relation to the researcher. This paper attempts to address such questions with reference to people who are dying. A case is made to defend the view that no research is morally justifiable with this client group. Less extreme views are also explored. One justification for such research activity comes from a rights-based perspective and another from the weighing of benefits and harms. In the process of exploring these issues, the author attempts to demonstrate that no research methodology can be said to be benign.
Human Rights and Environmental Ethics
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Mohammad Ali Basir
Full Text Available Happiness of human beings in his/her worldly life and even the hereafter has direct contact with the environment's health. Healthy environment is central to the worldly and spiritual human prosperity. Today, the unbridled destruction of the environment (water, air, space is threatening the universal human rights. The ethics protecting environment has universal foundations and principles which are shared by religions as well as legal and philosophical scholars. This article tries to deal with the relationship between human rights and environmental ethics. The main question this research is going to answer is whether human rights can be realized through the promotion of environmental ethics. The main premise of this paper is that through the development of environmental ethics, universal human rights can be better achieved. The research method of this paper is descriptive – analytical by using library tools. ze: 11.0pt;letter-spacing:-.2pt'> Within the law and justice system in practice in the Islamic Republic of Iran, fee splitting in considered unacceptable and illegal and fee splitters may be pursued by law. The same is true in different societies and most medical councils and accepted ethical codes and guidelines. It is clearly stated in the fifth paragraph of the medical affidavit vowed by all Iranian medical students and doctors that fee splitting is considered amoral and even illegal and that healthcare and medical practices are not to be used as a means of gathering wealth for oneself. All Islamic religious leaders have also questioned the lawfulness of money and wealth earned by fee splitting. The act of fee splitting is also recognized as unethical and unlawful in the guidelines and codes affected by universal medicine societies. کمال انسان در حیات دنیوی و حتی اخروی ارتباط مستقیم با داشتن محیط زیست سالم است. محیط زیست سالم زمینهساز سعادت �
A 'good' ethical review: audit and professionalism in research ethics
DEFF Research Database (Denmark)
Douglas-Jones, Rachel
How does one conduct, measure and record a 'good' ethical review of biomedical research? To what extent do ethics committees invoke professionalism in researchers and in themselves, and to what extent do they see competence as adherence to a set of standard operating procedures for ethical review......? Drawing on ethnographic fieldwork with the Forum of Ethics Review Committees of Asia and the Pacific (FERCAP), a capacity-building NGO that runs ethics committee trainings and reviews in the Asia Pacific region, I develop an analysis of ethical review and its effects. I focus on a 'second-order audit' run...... by FERCAP, which recognises committees according to a set of standards that are designed to render 'local' committees internationally legible. The article adds to a growing comparative literature that expands studies of audit-like measuring and disciplining activities beyond western contexts and enriches...
Painful dilemmas: the ethics of animal-based pain research
DEFF Research Database (Denmark)
Magalhães-Sant'Ana, M.; Sandøe, Peter; Olsson, I. A. S.
While it has the potential to deliver important human benefits, animal-based pain research raises ethical questions, because it involves inducing pain in sentient beings. Ethical decision-making, connected with this variety of research, requires informed harm-benefit analysis, and the aim of this...
A critical review of health research ethical guidelines regarding ...
African Journals Online (AJOL)
Background. Over the past decades there have been tremendous efforts to improve the ethical conduct of research involving humans throughout the world. As a one-size-fits-all philosophy can no longer work, most countries have developed specific legal and ethical guidelines for research, tailored to their own context.
Ethics in research with human beings: some issues about Psychology Ética em pesquisa com seres humanos: alguns tópicos sobre a psicologia
Directory of Open Access Journals (Sweden)
Sílvia Helena Koller
Full Text Available This paper examines some ethical issues in research with human beings, especially addressing the area of Psychology, such as the use of ethical codes; minimum risk; informed consent; debriefing; confidentiality; and ethical committees. It suggests ways for researchers to increase understanding and the proper use of the ethical codes, to guarantee their own protection, and to avoid abuses of power. Special attention is given to methodological issues related to ethics.Este artigo examina alguns aspectos éticos em pesquisa com seres humanos, especialmente endereçando a área da Psicologia, tais como o uso de resoluções éticas; risco mínimo; consentimento livre e esclarecido; decepção; confidencialidade e atuação de comitês de ética. Sugere caminhos aos pesquisadores para incrementar o entendimento e o uso apropriado de códigos de ética, para garantir sua própria proteção e evitar abuso de poder. Atenção especial é dada a assuntos metodológicos relacionados à ética.
Research Ethics in Sign Language Communities
Harris, Raychelle; Holmes, Heidi M.; Mertens, Donna M.
Codes of ethics exist for most professional associations whose members do research on, for, or with sign language communities. However, these ethical codes are silent regarding the need to frame research ethics from a cultural standpoint, an issue of particular salience for sign language communities. Scholars who write from the perspective of…
[Research ethics and developing countries].
Dieudonné, Désiré Adiogo
Developing countries are a breeding ground for research, especially for infectious diseases and HIV. On one hand, due to the prevalence of these diseases in this part of the world, and on the other, due to its needs in terms of research, disease prevention and heath care. The actions taken in the fight against HIV infection over the past years, considering that the urgent state of the health care situation has been a sensitive issue for ethical deviation evident in the following examples: Nonoxynol 9 trial (1996-1999) in Cameroon; Tenofovir trial (2003-2005) in Cameroon; Trials of fusion inhibitors in Latin America. No sanctions were imposed due to these deviations, and there was no possibility of recourse. What can these poor states do faced with health care emergencies, the extreme vulnerability of these populations and the big powerful pharmaceutical companies whose turnover or even profits are higher than the GDP of these countries? It is of the utmost importance that an international court of appeal be established to handle litigation regarding research related issues and the fair sharing of the profits resulting from research. The protection of vulnerable populations and the strict respect of ethical rules can only be implemented to the fullest if sanctions are applied to abusers.
Upstream ethics in nanomedicine: a call for research.
Khushf, George
Insufficient attention has been given to ethical and social issues integral to nanomedicine. Part of this deficiency arises from some mistaken assumptions about ethics. I consider five of these: that ethics is only important when a technology is mature (reactionary ethics); that there are no new ethical issues in nanomedicine; that ethics involves a kind of risk assessment that is already being conducted; that ethics is a hindrance to science; and that ethics is a luxury for an ideal world. After critically assessing these assumptions, I consider two types of nanomedicine and the kinds of ethical issues they raise. Type 1 nanomedicine is of an incremental kind, and proper ethical assessment of the issues must involve a fine grained study of the specific application. Type 2 nanomedicine is of a more foundational, programmatic kind. Ethical issues raised by these more programmatic developments include challenges integral to formation of interdisciplinary teams; issues related to intellectual property, authorship and publication; development of informed consent and confidentiality protections associated with new data sets; future challenges to the clinician-patient relation and personalized medicine. Ethical analysis should also consider some of the reductionistic implications of engineering models and metaphors integral to nanomedicine, as well as uses of nanomedicine for non-medical purposes, such as human enhancement. Many of these challenges concern rate-limiting steps in nanomedical research, and they should be prominently featured in developing nanomedicine initiatives.
The ethics of patenting human embryonic stem cells.
Chapman, Audrey R
Just as human embryonic stem cell research has generated controversy about the uses of human embryos for research and therapeutic applications, human embryonic stem cell patents raise fundamental ethical issues. The United States Patent and Trademark Office has granted foundational patents, including a composition of matter (or product) patent to the Wisconsin Alumni Research Foundation (WARF), the University of Wisconsin-Madison's intellectual property office. In contrast, the European Patent Office rejected the same WARF patent application for ethical reasons. This article assesses the appropriateness of these patents placing the discussion in the context of the deontological and consequentialist ethical issues related to human embryonic stem cell patenting. It advocates for a patent system that explicitly takes ethical factors into account and explores options for new types of intellectual property arrangements consistent with ethical concerns.
Ethics in Psychiatric Research: Issues and Recommendations
Jain, Shobhit; Kuppili, Pooja Patnaik; Pattanayak, Raman Deep; Sagar, Rajesh
Psychiatric research has increased remarkably over recent decades to help in understanding the current trends and better therapeutic options for illness. On the other hand, there is also a trend toward higher rates of retraction of published papers in the recent years. Ethics is required to maintain and increase the overall quality and morality of research. Psychiatric research faces several unique ethical challenges. Ethical guidelines are very important tool of research which safeguards par...
Blending genetics and sociocultural historical inquiry: ethics, culture, and human subjects protection in international cross cultural research.
Sampson, Deborah A; Caldwell, Dennis; Taylor, Andre D; Taylor, Jacquelyn Y
In this paper, we examine the implementation and difficulties when conducting genetics research in a rural, traditional West African culture within the frame of the United States' grounded research ethics. Research challenges are highlighted by Western researchers following U.S. Institutional Review Board (IRB) guidelines and practices in a non-Western country. IRB concepts are culture bound in Western ideals that may not have synchronicity and compatibility with non-Western cultures. Differences in sociocultural norms, traditions, language, and geography were influencing factors that can affect application of IRB principles. Suggestions for change are offered, which will potentially aid researchers considering application of IRB requirements when conducting research in non-Westernized, non-industrialized countries.
Qualitative research ethics on the spot
DEFF Research Database (Denmark)
Sørensen, Nelli Øvre; Øye, Christine; Glasdam, Stinne
Abstract Background: The increase in medical ethical regulations and bureaucracy handled by institutional review boards and healthcare institutions puts the researchers using qualitative methods in a challenging position. Method: Based on three different cases from three different research studies...... research ethical guidelines related to informed consent and doing no harm. Third, the article argues for the importance of having research ethical guidelines and review boards to question and discuss the possible ethical dilemmas that occur in qualitative research. Discussion and conclusion: Research...... ethics must be understood in qualitative research as relational, situational, and emerging. That is, that focus on ethical issues and dilemmas has to be paid attention on the spot and not only at the desktop....
Ethics in published brain–computer interface research
Specker Sullivan, L.; Illes, J.
Objective. Sophisticated signal processing has opened the doors to more research with human subjects than ever before. The increase in the use of human subjects in research comes with a need for increased human subjects protections. Approach. We quantified the presence or absence of ethics language in published reports of brain–computer interface (BCI) studies that involved human subjects and qualitatively characterized ethics statements. Main results. Reports of BCI studies with human subjects that are published in neural engineering and engineering journals are anchored in the rationale of technological improvement. Ethics language is markedly absent, omitted from 31% of studies published in neural engineering journals and 59% of studies in biomedical engineering journals. Significance. As the integration of technological tools with the capacities of the mind deepens, explicit attention to ethical issues will ensure that broad human benefit is embraced and not eclipsed by technological exclusiveness.
Research Ethics Consultation: Ethical and Professional Practice Challenges and Recommendations
Sharp, Richard R.; Taylor, Holly A.; Brinich, Margaret A.; Boyle, Mary M.; Cho, Mildred; Coors, Marilyn; Danis, Marion; Havard, Molly; Magnus, David; Wilfond, Benjamin
The complexity of biomedical research has increased considerably in the last decade, as has the pace of translational research. This complexity has generated a number of novel ethical issues for clinical investigators, institutional review boards (IRBs), and other oversight committees. In response, many academic medical centers have created formal research ethics consultation (REC) services to help clinical investigators and IRBs navigate ethical issues in biomedical research. Key functions of a REC service include: assisting with research design and implementation, providing a forum for deliberative exploration of ethical issues, and supplementing regulatory oversight. As increasing numbers of academic research institutions establish REC services, there is a pressing need for consensus about the primary aims and policies that should guide these activities. Establishing clear expectations about the aims and policies of REC services is important if REC programs are to achieve their full potential. Drawing on the experiences of a Clinical Translational Science Award (CTSA) Research Ethics Consultation Working Group, this article describes three major ethical and professional practice challenges associated with the provision of REC: 1) managing multiple institutional roles and responsibilities, 2) managing sensitive information, and 3) communicating with consultation requestors about how these issues are managed. The paper also presents several practical strategies for addressing these challenges and enhancing the quality of REC services. PMID:25607942
Ethical Challenges embedded in qualitative research interviews with close relatives
DEFF Research Database (Denmark)
Haahr, Anita; Norlyk, Annelise; Hall, Elisabeth
Nurse researchers engaged in qualitative interviews with patients and spouses in healthcare may often experience being in unforseen ethical dilemmas. Researchers are guided by the bioethical principles of justice, beneficence, non-maleficence respect for human rights and respect for autonomy...... through the entire research process. However, these principles are not sufficient to prepare researchers for unanticipated ethical dilemmas related to qualitative researchs interviews. We describe and discuss ethically challenging and difficult moments embedded in two cases from our own phenomenological...... interview studies. We argue that qualitative interviews involve navigation between being guided by bioethics as a researcher, being a therapist/nurse and being a fellow human being or even a friend. The researchers' premises to react to unexpected situations and act in a sound ethical manner must...
Ethical conduct for research : a code of scientific ethics
Marcia Patton-Mallory; Kathleen Franzreb; Charles Carll; Richard Cline
The USDA Forest Service recently developed and adopted a code of ethical conduct for scientific research and development. The code addresses issues related to research misconduct, such as fabrication, falsification, or plagiarism in proposing, performing, or reviewing research or in reporting research results, as well as issues related to professional misconduct, such...
Field Ethics: Towards Situated Ethics for Ethnographic Research on the Internet
Directory of Open Access Journals (Sweden)
Adolfo Estalella
Full Text Available This article reflects openly on the decisions that researchers have to deal with when undertaking qualitative research, especially ethnography, on the Internet. Our argument takes as starting point the ethical guidelines already developed for human subject research, and the way Internet researchers have tried to adapt these guidelines to their field. We argue that many of these ethical recommendations for researching the Internet have been designed according to specific applications (a chat, a mailing list, a blog, etc., conferring specific properties to technology and making inferences about the kind of interaction that is taking place through such devices (public or private, for instance. We question these approaches and consider that the attribution of properties to technology restricts the scope of the ethical decisions that the researcher can make. We advocate a dialogical and situated ethical practice that takes into account every particular context when making any ethical decision during research. In line with this proposal, we report some ethical dilemmas that we have had to face in our own fieldwork on blogging practices among Spanish bloggers. We also draw on our experience of creating a "field blog" as part of our research. We describe three axes that have helped us to guide our ethical decisions in the field: the scope of individual data collected for participants in the course of research, the explicit and open presence of the researchers, and the search for symmetry and mutuality with our respondents in the field. URN: urn:nbn:de:0114-fqs070328
Ethics and Truth in Archival Research
Tesar, Marek
The complexities of the ethics and truth in archival research are often unrecognised or invisible in educational research. This paper complicates the process of collecting data in the archives, as it problematises notions of ethics and truth in the archives. The archival research took place in the former Czechoslovakia and its turbulent political…
Balancing Ethics and Quality in Educational Research--The Ethical Matrix Method
Tangen, Reidun
This paper addresses ethical issues in educational research with a focus on the interplay between research ethics and both internal and external quality of research. Research ethics is divided into three domains: (1) ethics "within" the research community; (2) ethics concerning relationships with "individuals and groups directly…
Ethical dilemmas in malaria vector research in Africa: Making the ...
African Journals Online (AJOL)
Malaria vector research presents several dilemmas relating to the various ways in which humans are used in the malaria vector research enterprise. A review of the past and present practices reveals much about the prevailing attitudes and assumptions with regard to the ethical conduct of research involving humans.
Public health research involving aboriginal peoples: research ethics board stakeholders' reflections on ethics principles and research processes.
Flicker, Sarah; Worthington, Catherine A
The second edition (2010) of the Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans (TCPS2) prescribes a set of principles and provisions for engagement with Aboriginal communities. The objective of this study was to explore research ethics board (REB) stakeholder perspectives on the principles and processes of reviewing and conducting public health research with Aboriginal populations and communities. Twenty-four semi-structured qualitative interviews were conducted with REB staff, chairs, members (academic, community and student), and ethics policy key informants with knowledge of the ethics review process, including four Aboriginal participants. Interviews were professionally transcribed verbatim and thematically analyzed using NVivo 8 qualitative data management software. Three dominant themes emerged specific to ethical research practices with Aboriginal communities: 1) the importance of understanding Aboriginal research as a distinct form of research; 2) the unique nature and complexity of negotiating community consent; and 3) the importance of trust and relationship-building in the research process. Thematic results highlight the most prominent issues that REB participants encountered in reviewing research involving Aboriginal peoples. Continued attention needs to be paid to acknowledging and respecting issues of diversity in research involving diverse First Nations, Inuit and Métis peoples. While specific to Aboriginal peoples, the TCPS2 guidelines also illustrate processes and practices that may assist in the development of respectful, collaborative public health research relationships with other historically marginalized populations.
Health research ethics review and needs of institutional ethics ...
African Journals Online (AJOL)
for their time, but this was reported to be as a token and was not proportion to the workload. Monitoring of research undertaking was identified as a problem in all the research ethics committees. Sixty-nine percent of the committee members reported lack of mechanisms for monitoring of approved research while 33% did not ...
Clinical research ethics in Irish healthcare: diversity, dynamism and medicalization.
LENUS (Irish Health Repository)
Condell, Sarah L
Gaining ethical clearance to conduct a study is an important aspect of all research involving humans but can be time-consuming and daunting for novice researchers. This article stems from a larger ethnographic study that examined research capacity building in Irish nursing and midwifery. Data were collected over a 28-month time frame from a purposive sample of 16 nurse or midwife research fellows who were funded to undertake full-time PhDs. Gaining ethical clearance for their studies was reported as an early \\'rite of passage\\' in the category of \\'labouring the doctorate\\'. This article penetrates the complexities in Irish clinical research ethics by describing the practices these nurse and midwife researchers encountered and the experiences they had. The key issue of representation that occurred in the context of \\'medicalized\\' research ethics is further explored including its meaning for nursing or midwifery research.
Internet Research Ethics and the Policy Gap for Ethical Practice in Online Research Settings
Warrell, Jacqueline G.; Jacobsen, Michele
A growing number of education and social science researchers design and conduct online research. In this review, the Internet Research Ethics (IRE) policy gap in Canada is identified along with the range of stakeholders and groups that either have a role or have attempted to play a role in forming better ethics policy. Ethical issues that current…
Ethical aspects of malaria control and research
Jamrozik, Euzebiusz; de la Fuente-N??ez, V?nia; Reis, Andreas; Ringwald, Pascal; Selgelid, Michael J.
Malaria currently causes more harm to human beings than any other parasitic disease, and disproportionally affects low-income populations. The ethical issues raised by efforts to control or eliminate malaria have received little explicit analysis, in comparison with other major diseases of poverty. While some ethical issues associated with malaria are similar to those that have been the subject of debate in the context of other infectious diseases, malaria also raises distinct ethical issues ...
Ethical issues in action-oriented research in Indonesia.
Rachmawaty, Rini
Action-oriented research is one of the most frequent research types implemented to transform community health in Indonesia. Three researchers and 11 graduate students from a developed country in East Asia conducted a fieldwork program in a remote area in South Sulawesi Province. Although the project was completed, whether or not the international standards for human subject research were applied into that study remains unclear. This study aimed to examine ethical issues raised from that case, analyze constraints to the problems, and recommend alternatives to protect vulnerable populations from being exploited by local/international researchers. A problem-solving approach was used in this study. It began with problem identification, evaluation of the action-oriented research goal, investigation of the constraints to the problem, and recommendation of some relevant alternatives to address the central issue. Ethical Consideration: The approval for conducting the action-oriented research that being investigated in this work was only obtained from the Head of local district. Some ethical issues were found in this case. No special protection for this population, no informed consent was obtained from the participants, exposure to social and economic risks, no future benefits for the subjects, and conflict of interests. Lack of control from the local research ethics committee and lack of competence of local researchers on human subject research were considered as the constraints to the problems. Creating an independent research ethics committee, providing research ethics training to the local researchers, obtaining written/video consents from underserved populations, and meeting local health needs were recommended alternatives to solve these problems. Indonesian government bodies should reform their international collaborative system on research involving human subjects. Exploitation may not occur if all participants as well as all local and national governing bodies
[International regulation of ethics committees on biomedical research as protection mechanisms for people: analysis of the Additional Protocol to the Convention on Human Rights and Biomedicine, concerning Biomedical Research of the Council of Europe].
de Lecuona, Itziar
The article explores and analyses the content of the Council of Europe's Additional Protocol to the Convention on Human Rights and Biomedicine concerning Biomedical Research regarding the standard legal instrument in biomedical research, issued by an international organization with leadership in bioethics. This implies ethics committees are mechanisms of protection of humans in biomedical research and not mere bureaucratic agencies and that a sound inescapable international regulatory framework exists for States to regulate biomedical research. The methodology used focuses on the analysis of the background, the context in which it is made and the nature and scope of the Protocol. It also identifies and analyses the characteristics and functions of ethics committees in biomedical research and, in particular, the information that should be provided to this bodies to develop their functions previously, during and at the end of research projects. This analysis will provide guidelines, suggestions and conclusions for the awareness and training of members of these committees in order to influence the daily practice. This paper may also be of interest to legal practitioners who work in different areas of biomedical research. From this practical perspective, the article examines the legal treatment of the Protocol to meet new challenges and classic issues in research: the treatment of human biological samples, the use of placebos, avoiding double standards, human vulnerability, undue influence and conflicts of interest, among others. Also, from a critical view, this work links the legal responses to develop work procedures that are required for an effective performance of the functions assigned of ethics committees in biomedical research. An existing international legal response that lacks doctrinal standards and provides little support should, however, serve as a guide and standard to develop actions that allow ethics committees -as key bodies for States- to advance in
Towards an ethics safe harbor for global biomedical research
Dove, Edward S.; Knoppers, Bartha M.; Zawati, Ma'n H.
Although increasingly global, data-driven genomics and other 'omics'-focused research hold great promise for health discoveries, current research ethics review systems around the world challenge potential improvements in human health from such research. To overcome this challenge, we propose a 'Safe Harbor Framework for International Ethics Equivalency' that facilitates the harmonization of ethics review of specific types of data-driven international research projects while respecting globally transposable research ethics norms and principles. The Safe Harbor would consist in part of an agency supporting an International Federation for Ethics Review (IFER), formed by a voluntary compact among countries, granting agencies, philanthropies, institutions, and healthcare, patient advocacy, and research organizations. IFER would be both a central ethics review body, and also a forum for review and follow-up of policies concerning ethics norms for international research projects. It would be built on five principle elements: (1) registration, (2) compliance review, (3) recognition, (4) monitoring and enforcement, and (5) public participation. The Safe Harbor would create many benefits for researchers, countries, and the general public, and may eventually have application beyond (gen)omics to other areas of biomedical research that increasingly engage in secondary use of data and present only negligible risks. PMID:27774154
Ethical key issues and fundamental rights in paediatric research.
Altavilla, Annagrazia
This article is aimed at describing the methodology of "ethical reasoning" that finally led TEDDYNoE (Task-force in Europe for Drug Development for the Young) to propose the integration of international human rights law to develop coherent and exhaustive ethical recommendations on paediatric research at a European level. A large number of ethical guidelines and texts of varying legal force existing in the field of clinical research and in particular related to paediatrics are analysed. Differences and non-coordinated implementation are pointed out. Differences, tensions or outright contradictions among the provisions of these texts can generate confusion leading to the adoption of different ethical standards across Europe. In this context, the real challenge is to ensure that each child involved in a clinical trial in the EU territory may rely directly on the same principles and rights. Taking international human rights law as the main starting point to develop a coherent framework for paediatric research that incorporates all the relevant ethical considerations and existing guidelines is a way of achieving this objective. The implementation, at national and local level, of the "European Ethical Recommendations" (Eudralex 2008 vol. 10), based on international human rights law, seems to be the next step in facilitating a coordinated approach to the application of the Directive 2001/20/EC, as well as developing quality and ethically sound paediatric research.
[Yes to research, no to utilization? Medical, pharmacological and toxicological utilization of human embryonic stem cells from an ethical point of view].
Kress, H
In exceptional cases, the German Stem Cell Act allows research on human embryonic stem cells. However, it does not allow the implementation of the research results if this in turn requires the use of further embryonic stem cell lines. It has, in the meantime, transpired that such research results could be of concrete use. Thus, in the distant future, it could be used in the clinical treatment of patients. Already in the nearer future the use of human embryonic stem cell lines can be envisaged for both the development and testing of medicines as well as in the field of toxicology. To this end, research concerning embryo toxicity and neurotoxicity is ground-breaking. The toxicological and pharmacological use of human embryonic stem cell lines should serve the protection of human health as well as the safe and reliable use of medicines. In addition, animal experiments could be reduced, which is desirable from a point of view of animal protection ethics. Since research on human embryonic stem cell lines is actually permitted in Germany, the use of the respective research results should be allowed all the more. This follows from the basic human right to health protection and health care. Legal ambiguities, which still exist in this respect, should be removed.
Ethics Research in Environmental Education
African Journals Online (AJOL)
Feb 22, 2006 ... One of the themes running through the preceding few paragraphs about ethics as a philosophical inquiry is that, seen this way, it is an open-ended process with the potential to expose new challenges and generate new possibilities. Here ethics is not about codes, or codified behaviour, but is rather about ...
Training needs assessment in research ethics evaluation among research ethics committee members in three African countries: Cameroon, Mali and Tanzania.
Ateudjieu, Jérôme; Williams, John; Hirtle, Marie; Baume, Cédric; Ikingura, Joyce; Niaré, Alassane; Sprumont, Dominique
As actors with the key responsibility for the protection of human research participants, Research Ethics Committees (RECs) need to be competent and well-resourced in order to fulfil their roles. Despite recent programs designed to strengthen RECs in Africa, much more needs to be accomplished before these committees can function optimally. To assess training needs for biomedical research ethics evaluation among targeted countries. Members of RECs operating in three targeted African countries were surveyed between August and November 2007. Before implementing the survey, ethical approvals were obtained from RECs in Switzerland, Cameroon, Mali and Tanzania. Data were collected using a semi-structured questionnaire in English and in French. A total of 74 respondents participated in the study. The participation rate was 68%. Seventy one percent of respondents reported having received some training in research ethics evaluation. This training was given by national institutions (31%) and international institutions (69%). Researchers and REC members were ranked as the top target audiences to be trained. Of 32 topics, the top five training priorities were: basic ethical principles, coverage of applicable laws and regulations, how to conduct ethics review, evaluating informed consent processes and the role of the REC. Although the majority of REC members in the targeted African countries had received training in ethics, they expressed a need for additional training. The results of this survey have been used to design a training program in research ethics evaluation that meets this need.
Ethics as Critique: Foucault's Contribution to Research Ethics
DEFF Research Database (Denmark)
Christensen, Gerd
The aim of my talk is to discuss how we can consider Michel Foucault's concept of ethos and his endeavor for endless critique as an important contribution to research ethics in educational research. First, I intend to outline Foucault's concept of ethos and its link to his concept of critique...
[Sulfonamide-research on human subjects in Nazi concentration camps: a critical re-evaluation of the epistemological and ethical dimension].
Roelcke, Volker
Existing scholarship on the experiments performed in concentration camps beginning in 1942 on the value of sulfonamides in treatment of wound infections, in which inmates were used as experimental subjects, maintains that not only were the experiments ethically and legally completely reprehensible and unacceptable, but that they were also bad science in the sense that they were investigating questions that had already been resolved by valid medical research. In contrast to this, the paper argues on the basis of contemporary publications that the value of sulfonamides in the treatment of wound infections, including gas gangrene infections, was not yet established, that is, that the questions pursued by the experiments had not been resolved. It also argues that regarding their "design" and methodical principles, the experiments directly followed the rationality of contemporary clinical trials and animal experiments. However, for the step from animal to the human experiment, the experimental "objects" were only in regard to their body, but not to their individuality and subjectivity regarded as "human". In a concluding section, the paper lines out some implications for an adequate historical reconstruction of medical research on humans, in particular the importance of a combined focus on the scientific rationality as well as explicit or implicit value hierarchies. Further, the article points to the potential impact of such a revised image of the sulfonamide experiments for present day debates on the ethics of medical research.
Ethical Issues and Best Practice Considerations for Internet Research
Colvin, Jan; Lanigan, Jane
With rapidly increasing public use of the Internet and advances in Web technologies, family and consumer sciences researchers have the opportunity to conduct Internet-based research. However, online research raises critical ethical issues concerning human subjects that have an impact on research practices. This article provides a review of the…
Exporting ethics: a narrative about narrative research in South India.
Riessman, Catherine Kohler
The article notes some problems with the prepositional discourse of research ethics that is dominant in the West, and joins the call for an ethics-in-context approach in the human sciences. Using detailed examples from my fieldwork in South India to develop a narrative about ethical conflicts, I explore the problematics of informed consent, confidentiality and other concepts central to research ethics in the USA. The article underscores the inherent and practical risks associated with ethical universalism - applying 'universal' moral principles that have been constructed (that is, derived) in one cultural context and exporting them, without modifications, to another. The personal narrative includes my emotions in the field; they do moral work. The article draws theoretically from Bakhtin, Rabinow and feminist scholars of the Indian diaspora.
Ethical Aspects of Research in Ultrafast Communication
Driessen, A.; Sollie, Paul; Düwell, Marcus
This chapter summarizes the reflections of a scientist active in optical communication about the need of ethical considerations in technological research. An optimistic definition of ethics, being the art to make good use of technology, is proposed that emphasizes the necessarily involvement of not
Public health nursing, ethics and human rights.
Ivanov, Luba L; Oden, Tami L
Public health nursing has a code of ethics that guides practice. This includes the American Nurses Association Code of Ethics for Nurses, Principles of the Ethical Practice of Public Health, and the Scope and Standards of Public Health Nursing. Human rights and Rights-based care in public health nursing practice are relatively new. They reflect human rights principles as outlined in the Universal Declaration of Human Rights and applied to public health practice. As our health care system is restructured and there are new advances in technology and genetics, a focus on providing care that is ethical and respects human rights is needed. Public health nurses can be in the forefront of providing care that reflects an ethical base and a rights-based approach to practice with populations. © 2013 Wiley Periodicals, Inc.
Regulations and Ethical Considerations for Astronomy Education Research
Brogt, Erik; Dokter, Erin; Antonellis, Jessie
In this article, we briefly outline and discuss the legal and ethical ramifications of doing astronomy education research, with an emphasis on the practical issues that researchers have to keep in mind when engaging in, and publishing about, research that involves human subjects.
"Living" Ethical Dilemmas for Researchers When Researching with Children
Mortari, Luigina; Harcourt, Deborah
This article will explore some of the ethical dilemmas that confront researchers when they seek to invite children's participation in research. It firstly tracks the historical landscape of ethical research and will examine the influence of the United Nations Convention on the Rights of the Child (UNCRC) on participatory research with children.…
Communicating Qualitative Research Study Designs to Research Ethics Review Boards
Ells, Carolyn
Researchers using qualitative methodologies appear to be particularly prone to having their study designs called into question by research ethics or funding agency review committees. In this paper, the author considers the issue of communicating qualitative research study designs in the context of institutional research ethics review and offers…
Ethical issues in research on children
Directory of Open Access Journals (Sweden)
Đurić Slađana
Full Text Available Ethical issues that appear in researching children are the subject matter of relatively rich scientific literature, as well as a multitude of national and professional ethical codices. The broad thematization of ethical principles is indeed instigated by the rise of awareness of the seriousness of this problem, as well as by growing fears of potential abuse of children in contemporary research projects. General assertion that children are a vulnerable category of subjects that require special attention and protection from misuse in research projects prevails in literature. The main objective of this paper is to present general ethical issues that various areas of expertise researchers face when children and youth are the subjects of their studies. The principle of voluntary participation, the principle of balanced researcher - respondent relationship, and the principles of privacy, confidentiality and anonymity in studies of children are particularly presented.
Ethics in research; Ethik in der Forschung
Energy Technology Data Exchange (ETDEWEB)
Grass, Guido [Koeln Univ. (Germany). Ethik-Kommission der Medizinischen Fakultaet
Taking into account the state of the science, the ethics committee has to decide in research projects with study-related radiation exposure, whether a compelling need for the research project exists. During the critical appraisal, further ethical and legal aspects have to be considered. Even without an application according to X-ray Ordinance (RoeV) or Radiation Protection Ordinance (StrlSchV), the Ethics Committee should advise the applicant whether from their perspective the project requires an approval according to RoeV and StrlSchV. This requires the regular involvement of expert members.
Necessity for ethics in social engineering research
CSIR Research Space (South Africa)
Mouton, F
Full Text Available Social engineering is deeply entrenched in the fields of both computer science and social psychology. Knowledge is required in both these disciplines to perform social engineering based research. Several ethical concerns and requirements need...
Ethical Issues in Internet Research: International Good Practice and Irish Research Ethics Documents
Felzmann, Heike
This chapter discusses the main research ethical concerns that arise in internet research and reviews existing research ethical guidance in the Irish context in relation to its application to internet research. The chapter begins with a brief outline of high profile cases in the early history of the internet that highlighted specific emerging…
Current role of research ethics committees in health research in ...
African Journals Online (AJOL)
Current role of research ethics committees in health research in three geopolitical zones in Nigeria: A qualitative study. ... South African Journal of Bioethics and Law. Journal Home ... To document the current role of HRECs in the ethical practice of health research in Nigeria, 4 years after the establishment of the NHREC.
Rebuilding a Research Ethics Committee
Biggs, John S. G.; Marchesi, August
The principal ethics committee in Australia's Capital, Canberra, underwent a major revision in the last three years based on changes debated in the literature. Committee or Board structure varies widely; regulations determining minimum size and membership differ between countries. Issues such as the effectiveness of committee management,…
Enhancing the Ethical Conduct of HIV Research with Migrant Sex Workers: Human Rights, Policy, and Social Contextual Influences.
Directory of Open Access Journals (Sweden)
Shira M Goldenberg
Full Text Available Migrant sex workers are often highly marginalized and disproportionately experience health and social inequities, including high prevalence of HIV, sexually transmitted infections, and human rights violations. In recent years, research involving migrant sex workers has increased, yet many knowledge gaps remain regarding how best to protect research participant rights and welfare. Our objective was to identify key challenges and opportunities related to the responsible conduct of HIV research with migrant sex workers.Focus groups and interviews conducted with 33 female sex workers ≥18 years old at the Guatemala-Mexico border from June 2013-February 2014 were analyzed. Participants were recruited through community outreach by a local HIV prevention organization to sex work establishments such as bars, hotels, street corners, and truck stops.Key themes influencing research engagement for migrant sex workers included researcher mistrust and fear related to research participation, rooted in the social isolation frequently faced by recent migrants; intersecting concerns related to immigration status, fear of criminalization, and compliance with sex work regulations; and perceived benefits and risks of HIV/STI testing for migrants (e.g., immigration implications, stigma represent potential barriers and opportunities for the responsible conduct of research involving migrant sex workers.Results highlight the intersection between the human rights vulnerabilities of migrant sex workers and barriers to research participation, including social isolation of migrants and policy/legal barriers related to immigration and sex work. Findings illustrate the need for researchers to develop population-tailored procedures to address fears related to immigration and criminalization, and to reinforce positive and non-stigmatizing relationships with migrant sex workers. Community-led efforts to reduce stigma and foster community organization and supports for migrant
Enhancing the Ethical Conduct of HIV Research with Migrant Sex Workers: Human Rights, Policy, and Social Contextual Influences.
Goldenberg, Shira M; Brouwer, Kimberly C; Jimenez, Teresita Rocha; Miranda, Sonia Morales; Mindt, Monica Rivera
Migrant sex workers are often highly marginalized and disproportionately experience health and social inequities, including high prevalence of HIV, sexually transmitted infections, and human rights violations. In recent years, research involving migrant sex workers has increased, yet many knowledge gaps remain regarding how best to protect research participant rights and welfare. Our objective was to identify key challenges and opportunities related to the responsible conduct of HIV research with migrant sex workers. Focus groups and interviews conducted with 33 female sex workers ≥18 years old at the Guatemala-Mexico border from June 2013-February 2014 were analyzed. Participants were recruited through community outreach by a local HIV prevention organization to sex work establishments such as bars, hotels, street corners, and truck stops. Key themes influencing research engagement for migrant sex workers included researcher mistrust and fear related to research participation, rooted in the social isolation frequently faced by recent migrants; intersecting concerns related to immigration status, fear of criminalization, and compliance with sex work regulations; and perceived benefits and risks of HIV/STI testing for migrants (e.g., immigration implications, stigma) represent potential barriers and opportunities for the responsible conduct of research involving migrant sex workers. Results highlight the intersection between the human rights vulnerabilities of migrant sex workers and barriers to research participation, including social isolation of migrants and policy/legal barriers related to immigration and sex work. Findings illustrate the need for researchers to develop population-tailored procedures to address fears related to immigration and criminalization, and to reinforce positive and non-stigmatizing relationships with migrant sex workers. Community-led efforts to reduce stigma and foster community organization and supports for migrant sex workers are
The diverse ethics of translational research.
Sofaer, Neema; Eyal, Nir
Commentators on the ethics of translational research find it morally problematic. Types of translational research are said to involve questionable benefits, special risks, additional barriers to informed consent, and severe conflicts of interest. Translational research conducted on the global poor is thought to exploit them and increase international disparities. Some commentators support especially stringent ethical review. However, such concerns are grounded only in pre-approval translational research (now called T1). Whether or not T1 has these features, translational research beyond approval (T2: phase IV, health services, and implementation research) is unlikely to and, when conducted on the global poor, may support development. Therefore, insofar as T1 is morally problematic, and no independent objections to T2 exist, the ethics of translational research is diverse: while some translational research is problematic, some is not. Funding and oversight should reflect this diversity, and T2 should be encouraged, particularly when conducted among the global poor.
Understanding Health Research Ethics in Nepal.
Sharma, Jeevan Raj; Khatri, Rekha; Harper, Ian
Unlike other countries in South Asia, in Nepal research in the health sector has a relatively recent history. Most health research activities in the country are sponsored by international collaborative assemblages of aid agencies and universities. Data from Nepal Health Research Council shows that, officially, 1,212 health research activities have been carried out between 1991 and 2014. These range from addressing immediate health problems at the country level through operational research, to evaluations and programmatic interventions that are aimed at generating evidence, to more systematic research activities that inform global scientific and policy debates. Established in 1991, the Ethical Review Board of the Nepal Health Research Council (NHRC) is the central body that has the formal regulating authority of all the health research activities in country, granted through an act of parliament. Based on research conducted between 2010 and 2013, and a workshop on research ethics that the authors conducted in July 2012 in Nepal as a part of the on-going research, this article highlights the emerging regulatory and ethical fields in this low-income country that has witnessed these increased health research activities. Issues arising reflect this particular political economy of research (what constitutes health research, where resources come from, who defines the research agenda, culture of contract research, costs of review, developing Nepal's research capacity, through to the politics of publication of data/findings) and includes questions to emerging regulatory and ethical frameworks. © 2016 The Authors Developing World Bioethics Published by John Wiley & Sons Ltd.
Ethical aspects of clinical research with minors.
Bos, Wendy; Tromp, Krista; Tibboel, Dick; Pinxten, Wim
Over the past decades, clinical research has increasingly been subjected to ethical requirements and legal regulation. The specific focus of ethical and legal frameworks on competent adults (which serve as the paradigmatic research subject), however, has created an ambivalent attitude towards pediatric clinical research. On one hand, minors are regarded as a vulnerable population that deserves additional protection against the risks and burdens involved in clinical research. On the other hand, the population of minors should not be denied (or not get timely) access to the benefits of clinical research. In this paper, we will explore the legal regulation and ethical guidance that currently governs pediatric clinical research in the European Union and discuss the future challenges in this field. In addition, we will discuss major ethical concerns in pediatric clinical research, with a focus on the acceptability of research risks and the informed consent process. In the discussion, we will address key concerns in both regulating pediatric clinical research and implementing ethical and legal requirement in the actual pediatric research conduct.
HIV prevention research ethics: an introduction to the special issue.
Fisher, Celia B
This special issue of the Journal of Empirical Research on Human Research Ethics represents a sampling of projects fostered through the NIDA-funded Fordham University HIV Prevention Research Ethics Institute. The first three articles employ processes of co-learning to give voice to the experiences of individuals recovering from substance abuse and engaged in sex work who have participated in HIV prevention studies in the United States, India, and the Philippines. The fourth article describes a unique community-based approach to the development of research ethics training modules designed to increase participation of American Indian and Alaskan Native (AI/AN) tribal members as partners in research on health disparities. The last two articles focus a critical scholarly lens on two underexamined areas confronting IRB review of HIV research: The emerging and continuously changing ethical challenges of using social media sites for recruitment into HIV prevention research, and the handling of research-related complaints from participants involving perceived research harms or research experiences that do not accord with their initial expectations. Together, the articles in this special issue identify key ethical crossroads and provide suggestions for best practices that respect the values and merit the trust of research participants.
The 2016 CIOMS guidelines and public-health research ethics ...
African Journals Online (AJOL)
In November 2016, the Council for International Organizations of Medical Sciences (CIOMS) published its revised International Ethical Guidelines for Health-related Research Involving Humans. In relation to earlier versions, the scope of the new guidelines has been expanded to include public-health research.
Climate change, ethics and human security
National Research Council Canada - National Science Library
O'Brien, Karen L; St. Clair, Asuncion Lera; Kristoffersen, Berit; Cohen, Stewart J
"Presenting human security perspectives on climate change, this volume raises issues of equity, ethics and environmental justice, as well as our capacity to respond to what is increasingly considered...
Ethical use of social media to facilitate qualitative research.
Lunnay, Belinda; Borlagdan, Joseph; McNaughton, Darlene; Ward, Paul
Increasingly, qualitative health researchers might consider using social media to facilitate communication with participants. Ambiguity surrounding the potential risks intrinsic to social media could hinder ethical conduct and discourage use of this innovative method. We used some core principles of traditional human research ethics, that is, respect, integrity, and beneficence, to design our photo elicitation research that explored the social influences of drinking alcohol among 34 underage women in metropolitan South Australia. Facebook aided our communication with participants, including correspondence ranging from recruitment to feeding back results and sharing research data. This article outlines the ethical issues we encountered when using Facebook to interact with participants and provides guidance to researchers planning to incorporate social media as a tool in their qualitative studies. In particular, we raise the issues of privacy and confidentiality as contemporary risks associated with research using social media. © The Author(s) 2014.
Untapped ethical resources for neurodegeneration research
Directory of Open Access Journals (Sweden)
Ivinson Adrian J
Full Text Available Abstract Background The research community has a mandate to discover effective treatments for neurodegenerative disorders. The ethics landscape surrounding this mandate is in a constant state of flux, and ongoing challenges place ever greater demands on investigators to be accountable to the public and to answer questions about the implications of their work for health care, society, and policy. Methods We surveyed US-based investigators involved in neurodegenerative diseases research about how they value ethics-related issues, what motivates them to give consideration to those issues, and the barriers to doing so. Using the NIH CRISP database we identified 1,034 researchers with relevant, active grants and invited them to complete an online questionnaire. We received 193 responses. We used exploratory factor analysis to transform individual survey questions into a smaller set of factors, and linear regression to understand the effect of key variables of interest on the factor scores. Results Ethics-related issues clustered into two groups: research ethics and external influences. Heads of research groups viewed issues of research ethics to be more important than the other respondents. Concern about external influences was related to overall interest in ethics. Motivators clustered into five groups: ensuring public understanding, external forces, requirements, values, and press and public. Heads of research groups were more motivated to ensure public understanding of research than the other respondents. Barriers clustered into four groups: lack of resources, administrative burden, relevance to the research, and lack of interest. Perceived lack of ethics resources was a particular barrier for investigators working in drug discovery. Conclusions The data suggest that senior level neuroscientists working in the field of neurodegeneration (ND, and drug discovery specifically, are motivated to consider ethics issues related to their work, but the
Promising waste: biobanking, embryo research, and infrastructures of ethical efficiency.
Hurlbut, J Benjamin
Biobanks are custodial institutions that enhance the utility and value of biological materials by collecting and curating them. Their custodial functions tend to include ethical oversight and governance. This paper explores how biobanks increase the value of biological materials by standardizing routines of governance in order to engender "ethical efficiency." Focusing in particular upon banking of human embryos for research, the article offers an historical account of how human embryos came to be "waste" available for use by researchers in the US. It offers a case study of a human embryo biobank and the practices of ethical governance that the biobank employs to capture this waste and convert it into a valuable resource for research use. The article draws attention to the ways biobanks' emphasis on efficiency and resolving problems of ethical governance up front codifies otherwise contested normative relationships and authorizes uses of human biological materials that some see as ethically problematic, even as it eliminates institutionalized mechanisms of reflection in which such problems would otherwise be acknowledged and confronted.
What is special about the ethical issues in online research?
Elgesem, Dag
In the analysis of the ethical problems of online research, there is much to be learned from the work that has already been done on research ethics in the social sciences and the humanities. I discuss the structure of norms in the Norwegian ethical guidelines for research in the social sciences with respect to their relevance for the ethical issues of Internet research. A four-step procedure for the ethical evaluation of research is suggested. I argue that even though, at one level, the problems of online research are very similar to those we find in traditional areas of scientific research, there still are some issues that are unique to research online. A general model for the analysis of privacy and data protection is suggested. This model is then used to characterize the special problems pertaining to the protection of privacy in online contexts, and to argue that one cannot assume a simple distinction between the private and the public when researching in such contexts.
Ethics, collective health, qualitative health research and social justice.
Guerriero, Iara Coelho Zito; Correa, Fernando Peñaranda
The scientific field is characterized by the disputes about the delimitation of the field problems, methods and theories that can be considered scientific. The recognition that it is not neutral, that a researcher is a moral subject, and its practices are moral ones, entail that moral reflections, that is, ethics, should be a core process of every researcher. Therefore ethics is not a heteronomous issue, and cannot be reduced to guidelines. In the first part of this article we examine the need to develop an open approach to the construction of guidelines in a plural scientific field that must take into account diverse paradigms, which implies different values. The Brazilian process of writing guidelines on research ethics for social science and humanities in the context of the Ministry of Health will be discussed as an example. In the second part we expand the analysis of research ethics posing a perspective that integrates qualitative research, social justice and discipline trends. In the final considerations we explore the possibility that research ethics is better discussed taking into account the ontology, epistemology and political values rather than one specific methodological approach or from a dichotomic perspective between biomedicine versus social science and humanities.
Ethical Issues in Bereavement Research: An Overview.
Cook, Alicia Skinner
Guidelines for the conduct of ethical research are reviewed and applied to the field of thanatology. Unique aspects of bereavement studies are identified and are discussed in the context of socially sensitive research. Topics include: freedom for subjects to withdraw from research, consideration of risks and benefits, and the qualifications of…
Ethical Issues in Collaborative Action Research
Locke, Terry; Alcorn, Noeline; O'Neill, John
This article begins by raising issues around the way in which ethical approval for research is managed in university settings, where committees often base their assumptions on a principlist approach making a number of assumptions that we consider to be contestable, such as a neat separation between researcher and researched. However, collaborative…
Future issues in transplantation ethics: ethical and legal controversies in xenotransplantation, stem cell, and cloning research.
Shapiro, Robyn S
With little prospect of developing a sufficient supply of human transplantable organs to meet the large and growing demand, attention has turned to xenotransplantation, as well as stem cell and cloning research, as possible approaches for alleviating this allograft shortage. This article explores ethical and legal issues that surround developments in these fields.
The establishment of ethical guidelines for biomedical research in ...
African Journals Online (AJOL)
science, and technology (1, 2). In this regard, several ethical ... sovereignty of internationally adopted ethical guidelines. (6). ... a scientific journal due to the failure to obtain the patient's consent ... should include training in research ethics.
Videorecording in clinical research: mapping the ethical terrain.
Broyles, Lauren M; Tate, Judith A; Happ, Mary Beth
Videography is used increasingly for data collection in clinical research; however, addressing related ethical issues and obtaining institutional review board approval to use videography are often significant and daunting challenges for investigators. Guidelines and specific strategies are extremely limited in the literature. To protect the interests of videorecorded patient and clinician research participants, several ethical issues deserve thoughtful consideration and planning: informed consent, confidentiality and privacy, and participant burden and safety. The Study of Patient-Nurse Effectiveness with Assisted Communication Strategies is used to illustrate how these ethical issues can be managed in a clinical trial. Excerpts from informed consent documents are included, and special attention is given to the critical care environment, vulnerable patient populations, and clinicians as participants. Ethical issues related to the use of videography for patient-oriented research in the acute care hospital setting are clarified, and specific examples of how these issues can be addressed are provided. Ethical issues related to using videorecording in acute care research can be adequately addressed through existing universal human subjects protection strategies when the precise nature of the ethical issues is defined clearly.
[Scientific ethics and the use of human material or data].
Valenzuela, Carlos Y
A scientific article censured by superposing obstacles to its reading remembers the censure of Galileo made by the Inquisition. The censure followed the failure to obtain the informed consent (IC) to disclose results of old samples. At present, the use of collected data or samples for a new research needs a new IC, in most ethical protocols. The Helsinki Code allows the research ethics committees the authorization for the use of that information. This norm is founded rather in commercial, legal or protective arguments than in ethical bases. This article criticizes this norm from the Scientific Ethics viewpoint because: i) the ownership of the genome and environment that originate a person is not of such person but of the human society and Homo sapiens species, ii) a person is not the unique owner of that information; laboratories, institutions, health services and research teams add constituents to it, iii) several violations to this norm occurring in medical, labor, legal and social practice show it as biased against science, iv) if this stored information and its use are beneficial for humankind (its proper owner) it is ethically obligatory to use it. It is proposed to create an anonymous World Bank for Human Information with open access and universal transparency. This universal collection of data handled under universal accepted ethical norms should prevent exclusive private use of public information, non-publication of negative results, illicit and unethical use of human data.
Internet research and ethics: transformative issues in nursing education research.
Mahon, Pamela Young
As practice in the educational and clinical settings seeks to be evidence based, faculty are increasingly required to conduct research and publish the results to advance the science of our profession. The purpose of this article is to discuss transformative research ethics because Internet use is an increasing component of current research studies. How nurse educators can engage in research-utilizing methodologies inclusive of technology while adhering to ethical standards developed before the advance of the Internet is reviewed. Recommendations are cited to address the new questions that arise at institutional review board meetings resulting from potential ethical implications of using students or research participants in cyber space. © 2014.
Teaching ethics of psychopharmacology research in psychiatric residency training programs.
Beresin, Eugene V; Baldessarini, Ross J; Alpert, Jonathan; Rosenbaum, Jerrold
American psychiatric residency training programs are now required to teach principles of research ethics. This task is especially pressing in light of evolving guidelines pertaining to human subjects, including psychiatric patients, especially when psychopharmacology is involved. Residents need to understand principles of research ethics and implications of roles of psychiatrists as investigators and clinicians. We consider major contemporary ethical issues in clinical psychiatric research, with an emphasis on psychopharmacology, and implications of addressing them within residency training programs. We reviewed recent literature on ethical issues in clinical research and on medical education in bioethics. This report considers: (1) an overview of current training; (2) perceived needs and rationales for training in research ethics, (3) recommended educational content and methods; (4) issues that require further study (including demonstration of acquired knowledge, practice issues, and the treatment versus-investigation misconception); and (5) conclusions. Recommended components of residency training programs include basic ethical principles; scientific merit and research design; assessment of risks and benefits; selection and informed consent of patient-subjects; and integrity of the clinical investigator, including definition of roles, conflicts-of-interest, and accountability. Evaluation of educational effectiveness for both trainees and faculty is a recommended component of such programs. We recommend that psychiatric training include education about ethical aspects of clinical research, with a particular emphasis on psychopharmacology. These activities can efficiently be incorporated into teaching of other aspects of bioethics, research methods, and psychopharmacology. Such education early in professional development should help to clarify roles of clinicians and investigators, improve the planning, conduct and reporting of research, and facilitate career
Toward ethical norms and institutions for climate engineering research
Morrow, David R.; Kopp, Robert E.; Oppenheimer, Michael
Climate engineering (CE), the intentional modification of the climate in order to reduce the effects of increasing greenhouse gas concentrations, is sometimes touted as a potential response to climate change. Increasing interest in the topic has led to proposals for empirical tests of hypothesized CE techniques, which raise serious ethical concerns. We propose three ethical guidelines for CE researchers, derived from the ethics literature on research with human and animal subjects, applicable in the event that CE research progresses beyond computer modeling. The Principle of Respect requires that the scientific community secure the global public's consent, voiced through their governmental representatives, before beginning any empirical research. The Principle of Beneficence and Justice requires that researchers strive for a favorable risk-benefit ratio and a fair distribution of risks and anticipated benefits, all while protecting the basic rights of affected individuals. Finally, the Minimization Principle requires that researchers minimize the extent and intensity of each experiment by ensuring that no experiments last longer, cover a greater geographical extent, or have a greater impact on the climate, ecosystem, or human welfare than is necessary to test the specific hypotheses in question. Field experiments that might affect humans or ecosystems in significant ways should not proceed until a full discussion of the ethics of CE research occurs and appropriate institutions for regulating such experiments are established.
Toward ethical norms and institutions for climate engineering research
Energy Technology Data Exchange (ETDEWEB)
Morrow, David R [Department of Philosophy, Hunter College, City University of New York, 695 Park Avenue, New York, NY 10065 (United States); Kopp, Robert E; Oppenheimer, Michael, E-mail: email@example.com [Woodrow Wilson School of Public and International Affairs and Department of Geosciences, Princeton University, Princeton, NJ 08544 (United States)
Climate engineering (CE), the intentional modification of the climate in order to reduce the effects of increasing greenhouse gas concentrations, is sometimes touted as a potential response to climate change. Increasing interest in the topic has led to proposals for empirical tests of hypothesized CE techniques, which raise serious ethical concerns. We propose three ethical guidelines for CE researchers, derived from the ethics literature on research with human and animal subjects, applicable in the event that CE research progresses beyond computer modeling. The Principle of Respect requires that the scientific community secure the global public's consent, voiced through their governmental representatives, before beginning any empirical research. The Principle of Beneficence and Justice requires that researchers strive for a favorable risk-benefit ratio and a fair distribution of risks and anticipated benefits, all while protecting the basic rights of affected individuals. Finally, the Minimization Principle requires that researchers minimize the extent and intensity of each experiment by ensuring that no experiments last longer, cover a greater geographical extent, or have a greater impact on the climate, ecosystem, or human welfare than is necessary to test the specific hypotheses in question. Field experiments that might affect humans or ecosystems in significant ways should not proceed until a full discussion of the ethics of CE research occurs and appropriate institutions for regulating such experiments are established.
Doing the Right Thing: A Practical Guide to Ethics for Undergraduate Researchers
Maguire, Moira; Delahunt, Brid; Everitt-Reynolds, Ann
This chapter provides practical support and guidance to students around the ethical dimensions of undergraduate research with human participants. Ethical considerations are perhaps the most important aspect of any research project involving human participants, especially as they speak of the rights of individuals and groups within society. Ethics in research is as much about the process as the final product and emphasis is put on maintaining integrity throughout the life-cycle of the project....
Ethical aspects of epidemiological research in contaminated sites.
Soskolne, Colin L
This paper brings understanding to the ethical dimensions of human health research conducted in the context of contaminated sites. Principle-based ethical analysis, complemented with virtuous traits of character, aid in bringing clarity to recommendations for actions following research. Epidemiology is the discipline for conducting health research not only because of its methodological foundations, but also because of its social justice focus. Because contaminated sites include communities that have been exposed to excessive concentrations of hazardous substances, extra care is needed when using epidemiology. For instance, vigilance over potential influence and engagement with affected communities are needed. Community engagement not only aids in understanding the contextual framework, but also demonstrates respect for both community and individual autonomy. Ethical analysis makes transparent the rationale for decisions against which researchers can be held accountable and provides a basis for evaluating observed outcomes as a function of the rationale provided for past actions.
Ethical aspects of human biobanks: a systematic review.
Budimir, Danijela; Polasek, Ozren; Marusić, Ana; Kolcić, Ivana; Zemunik, Tatijana; Boraska, Vesna; Jeroncić, Ana; Boban, Mladen; Campbell, Harry; Rudan, Igor
To systematically assess the existing literature on ethical aspects of human biobanks. We searched the Web of Science and PubMed databases to find studies addressing ethical problems in biobanks with no limits set (study design, study population, time period, or language of publication). All identified articles published until November 2010 were included. We analyzed the type of published articles, journals publishing them, involvement of countries/institutions, year of publication, and citations received, and qualitatively assessed every article in order to identify ethical issues addressed by the majority of published research on human biobanking. Hundred and fifty four studies satisfied our review criteria. The studies mainly came from highly developed countries and were all published in the last two decades, with over half of them published in 2009 or 2010. They most commonly discussed the informed consent, privacy and identifiability, return of results to participants, importance of public trust, involvement of children, commercialization, the role of ethics boards, international data exchange, ownership of samples, and benefit sharing. The focus on ethical aspects is strongly present through the whole biobanking research field. Although there is a consensus on the old and most typical ethical issues, with further development of the field and increasingly complex structure of human biobanks, these issues will likely continue to arise and accumulate, hence requiring constant re-appraisal and continuing discussion.
Policy and Ethical Implications of Biosocial Research.
Udry, J. Richard
Social scientists are often concerned that research on biological causes of behavior will encourage biologically-based public policy. By simultaneously examining both social and biological causes of behavior, biosocial research models prevent simplistic biological thinking. Concludes that biosocial models clarify ethical problems rather than…
Ethical regulation or regulating ethics? The need for both internal and external governance of human experimentation.
Tomossy, George F
Research regulation is a timely topic for discussions in bioethics and public health policy. This response to articles in the previous special issue of the Monash Bioethics Review emphasises the importance of having both internal and external controls on human experimentation. Unless both elements are incorporated into research ethics governance frameworks, they will ultimately fail to achieve what should be their primary goal: human subject protection.
Ethics in Animal-Based Research.
Gross, Dominik; Tolba, René H
In recent years, there have been a number of new demands and regulations which have reignited the discussion on ethics in animal-based research. In the light of this development, the present review first presents an overview of underlying core ethical questions and issues. This is followed by an outline of the current discussion on whether animals (used for experimentation) should have rights ascribed to them and whether animals need to have certain characteristics in order to be the beneficiaries of rights. The discourse on concepts of sentience and the 'sociozoological scale' in particular is mapped out in this regard. There follows an outline of relevant ethical positions and current moral approaches to animal-based research (animal rights position, utilitarianism, 'convergence position', intrinsic cultural value of fundamental research, 'contractarianism', anthropocentrism, principle of the three Rs). 2015 S. Karger AG, Basel.
The 2016 CIOMS guidelines and public-health research ethics
African Journals Online (AJOL)
Dec 1, 2017 ... 2 SAJBL 93. ARTICLE. On 29 November 2016, the executive of the Council for International. Organizations of Medical Science (CIOMS) approved the newly revised version of International Ethical Guidelines for Health-related Research. Involving Humans.[1] This document combines and replaces the 2002.
Ethical and legal controversies in cloning for biomedical research - a ...
African Journals Online (AJOL)
Therapeutic embryonic stem cell research raises a number of ethical and legal issues. The promised benefits are new and important knowledge of human embryological development, gene action, and the production of transplantable tissue and organs that could be effective in reversing or curing currently irreversible ...
Ethical considerations in tissue engineering research: Case studies in translation.
Baker, Hannah B; McQuilling, John P; King, Nancy M P
Tissue engineering research is a complex process that requires investigators to focus on the relationship between their research and anticipated gains in both knowledge and treatment improvements. The ethical considerations arising from tissue engineering research are similarly complex when addressing the translational progression from bench to bedside, and investigators in the field of tissue engineering act as moral agents at each step of their research along the translational pathway, from early benchwork and preclinical studies to clinical research. This review highlights the ethical considerations and challenges at each stage of research, by comparing issues surrounding two translational tissue engineering technologies: the bioartificial pancreas and a tissue engineered skeletal muscle construct. We present relevant ethical issues and questions to consider at each step along the translational pathway, from the basic science bench to preclinical research to first-in-human clinical trials. Topics at the bench level include maintaining data integrity, appropriate reporting and dissemination of results, and ensuring that studies are designed to yield results suitable for advancing research. Topics in preclinical research include the principle of "modest translational distance" and appropriate animal models. Topics in clinical research include key issues that arise in early-stage clinical trials, including selection of patient-subjects, disclosure of uncertainty, and defining success. The comparison of these two technologies and their ethical issues brings to light many challenges for translational tissue engineering research and provides guidance for investigators engaged in development of any tissue engineering technology. Copyright © 2015 Elsevier Inc. All rights reserved.
Detention and deception: limits of ethical acceptability in detention research.
Minas, I H
an explicit ethical framework for the conduct of research in settings characterised by a very problematic human rights context.
Ethical dimension of circle Integrative Community Therapy on qualitative research
Directory of Open Access Journals (Sweden)
Paula Renata Miranda dos Santos
Full Text Available This study discusses ethical issues in research involving human beings and seeks to understand the relationship between qualitative research and the ethical care guidelines for Integrative Community Therapy (ICT circles based on Resolution 466/12 of the National Health Council of the Ministry of Health of Brazil. This is documentary research, which analyzed Resolution 466/12 and ICT circles seeking to make a connection between the ethical guidelines contained in both. The analysis of the corpus was directed toward the construction of the following results: the person's perception, cultural diversity and community. It also brings in consideration of the influence of the ethical dimension of the ICT circles on qualitative research. We conclude that ICT circles are innovative in the sense of the diversity of participants and respect for cultural and social differences. Thus, ICT circles promote acquisition of quality information for social research as well as compliance with the ethical guidelines outlined in Resolution No. 466/12.
Ethical dimension of circle Integrative Community Therapy on qualitative research
Directory of Open Access Journals (Sweden)
Paula Renata Miranda dos Santos
Full Text Available This study discusses ethical issues in research involving human beings and seeks to understand the relationship between qualitative research and the ethical care guidelines for Integrative Community Therapy (ICT circles based on Resolution 466/12 of the National Health Council of the Ministry of Health of Brazil. This is documentary research, which analyzed Resolution 466/12 and ICT circles seeking to make a connection between the ethical guidelines contained in both. The analysis of the corpus was directed toward the construction of the following results: the person's perception, cultural diversity and community. It also brings in consideration of the influence of the ethical dimension of the ICT circles on qualitative research. We conclude that ICT circles are innovative in the sense of the diversity of participants and respect for cultural and social differences. Thus, ICT circles promote acquisition of quality information for social research as well as compliance with the ethical guidelines outlined in Resolution No. 466/12.
Good ethics can sometimes mean better science: research ethics and the Milgram experiments.
McArthur, Dan
All agree that if the Milgram experiments were proposed today they would never receive approval from a research ethics board. However, the results of the Milgram experiments are widely cited across a broad range of academic literature from psychology to moral philosophy. While interpretations of the experiments vary, few commentators, especially philosophers, have expressed doubts about the basic soundness of the results. What I argue in this paper is that this general approach to the experiments might be in error. I will show that the ethical problems that would prevent the experiments from being approved today actually have an effect on the results such that the experiments might show less than many currently suppose. Making this case demonstrates two conclusions. The first is that there are good reasons to think that the conclusions of many of Milgram's commentators might be too strong. The second conclusion is a more general one. The ethics procedures commonly used by North American research ethics boards serve not only to protect human participants in research but also can sometimes help secure, to an extent, the integrity of results. In other words, good ethics can sometimes mean better science.
Research Ethics and Ethical Research: Some Observations from the Global South
Zhang, J. J.
This paper aims to achieve two objectives. Firstly, it elicits some of the concerns for universal research ethics. It is argued that ethical codes are never universal; they are geographically sensitive. As such, it is important to "develop authentic individual responses to potentially unique circumstances". Secondly, in going beyond a…
[From Nuremberg to the ethics committees in human experimentation].
Demarez, Jean-Paul
During the Nuremberg trials, the accusation prompted the creation of an ad hoc committee to advise on human experiments carried out on prisoners during wartime in the USA. Precisely a charge that had been brought against Karl Brandt and his colleagues. This committee was the forerunner of the Independent Committees, to which the Declaration of Helsinki assigned a role in analysing the ethics of research projects in humans. From 1980 onwards, in industrialised countries, the legislation regarding clinical trials began to incorporate similar structures, IRBs in the United States of America, Ethics Committees elsewhere, and the ''Committee for the Protection of Persons" in France. However, at that time, in spite of the misleading words, we went from ethics to law, from rules of conduct intended for researchers to legal regulations organising relations between sponsors, investigators and persons participating in biomedical research, which is not the same thing.
Incorporating ethical principles into clinical research protocols: a tool for protocol writers and ethics committees
Li, Rebecca H; Wacholtz, Mary C; Barnes, Mark; Boggs, Liam; Callery-D'Amico, Susan; Davis, Amy; Digilova, Alla; Forster, David; Heffernan, Kate; Luthin, Maeve; Lynch, Holly Fernandez; McNair, Lindsay; Miller, Jennifer E; Murphy, Jacquelyn; Van Campen, Luann; Wilenzick, Mark; Wolf, Delia; Woolston, Cris; Aldinger, Carmen; Bierer, Barbara E
A novel Protocol Ethics Tool Kit ('Ethics Tool Kit') has been developed by a multi-stakeholder group of the Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard. The purpose of the Ethics Tool Kit is to facilitate effective recognition, consideration and deliberation of critical ethical issues in clinical trial protocols. The Ethics Tool Kit may be used by investigators and sponsors to develop a dedicated Ethics Section within a protocol to improve the consistency and transparency between clinical trial protocols and research ethics committee reviews. It may also streamline ethics review and may facilitate and expedite the review process by anticipating the concerns of ethics committee reviewers. Specific attention was given to issues arising in multinational settings. With the use of this Tool Kit, researchers have the opportunity to address critical research ethics issues proactively, potentially speeding the time and easing the process to final protocol approval. PMID:26811365
Beyond human subjects: risk, ethics, and clinical development of nanomedicines.
Kimmelman, Jonathan
Clinical testing of nanomedicines presents two challenges to prevailing, human subject-centered frameworks governing research ethics. First, some nanomedical applications may present risk to persons other than research subjects. Second, pressures encountered in testing nanomedicines may present threats to the kinds of collaborations and collective activities needed for supporting clinical translation and redeeming research risk. In this article, I describe how similar challenges were encountered and addressed in gene transfer, and sketch policy options that might be explored in the nanomedicine translation arena. © 2012 American Society of Law, Medicine & Ethics, Inc.
Ethical Issues and Practical Challenges in Suicide Research.
Hom, Melanie A; Podlogar, Matthew C; Stanley, Ian H; Joiner, Thomas E
Research with human subjects represents a critical avenue for suicide prevention efforts; however, such research is not without its ethical and practical challenges. Specifically, given the nature of research with individuals at elevated risk for suicide (e.g., increased concerns regarding participant safety, adverse events, liability, difficulties often arise during the institutional review board (IRB) evaluation and approval process. This paper aims to discuss IRB-related issues associated with suicide prevention research, including researcher and IRB panel member responsibilities, suicide risk assessment and management ethics and procedures, informed consent considerations, preparation of study protocols, and education and training. Points to consider and components to potentially include in an IRB application for suicide-related research are additionally provided. Literature relevant to ethics in suicide research and suicide risk assessment and management was reviewed and synthesized. Suicide research can be conducted in accordance with ethical principles while also furthering the science of suicide prevention. Despite the challenging nature of suicide prevention research, empirically informed solutions exist to address difficulties that may emerge in interfacing with IRBs. There remain areas for improvement in the IRB approval process that warrant further investigation and work.
Research Integrity and Research Ethics in Professional Codes of Ethics: Survey of Terminology Used by Professional Organizations across Research Disciplines
Komić, Dubravka; Marušić, Stjepan Ljudevit; Marušić, Ana
Professional codes of ethics are social contracts among members of a professional group, which aim to instigate, encourage and nurture ethical behaviour and prevent professional misconduct, including research and publication. Despite the existence of codes of ethics, research misconduct remains a serious problem. A survey of codes of ethics from 795 professional organizations from the Illinois Institute of Technology's Codes of Ethics Collection showed that 182 of them (23%) used research integrity and research ethics terminology in their codes, with differences across disciplines: while the terminology was common in professional organizations in social sciences (82%), mental health (71%), sciences (61%), other organizations had no statements (construction trades, fraternal social organizations, real estate) or a few of them (management, media, engineering). A subsample of 158 professional organizations we judged to be directly involved in research significantly more often had statements on research integrity/ethics terminology than the whole sample: an average of 10.4% of organizations with a statement (95% CI = 10.4-23-5%) on any of the 27 research integrity/ethics terms compared to 3.3% (95% CI = 2.1–4.6%), respectively (Pethics concepts used prescriptive language in describing the standard of practice. Professional organizations should define research integrity and research ethics issues in their ethics codes and collaborate within and across disciplines to adequately address responsible conduct of research and meet contemporary needs of their communities. PMID:26192805
Promoting an ethic of engagement in pediatric palliative care research.
Rahimzadeh, Vasiliki; Bartlett, Gillian; Longo, Cristina; Crimi, Laura; Macdonald, Mary Ellen; Jabado, Nada; Ells, Carolyn
This paper defends the ethical and empirical significance of direct engagement with terminally ill children and adolescents in PPC research on health-related quality of life. Clinical trials and other forms of health research have resulted in tremendous progress for improving clinical outcomes among children and adolescents diagnosed with a life-threatening illness. Less attention has been paid, however, to engaging this patient population directly in studies aimed at optimizing health-related quality of life in PPC. Though not restricted to care at the end of life, PPC--and by extension PPC research--is in part dependent on recognizing the social complexities of death and dying and where health-related quality of life is a fundamental element. To explore these complexities in depth requires partnership with terminally ill children and adolescents, and acknowledgement of their active social and moral agency in research. Principles of pediatric research ethics, theoretical tenets of the "new sociology of the child(hood)," and human rights codified in the United Nations Convention on the Rights of the Child (UNCRC) underpin the position that a more engagement-centered approach is needed in PPC research. The ethics, sociologies and human rights of engagement will each be discussed as they relate to research with terminally ill children and adolescents in PPC. Qualitative method(ologies) presented in this paper, such as deliberative stakeholder consultations and phenomenology of practice can serve as meaningful vehicles for achieving i) participation among terminally ill children and adolescents; ii) evidence-bases for PPC best practices; and iii) fulfillment of research ethics principles. PPC research based on direct engagement with PPC patients better reflects their unique expertise and social epistemologies of terminal illness. Such an approach to research would strengthen both the ethical and methodological soundness of HRQoL inquiry in PPC.
Sex Work Research: Methodological and Ethical Challenges
Shaver, Frances M.
The challenges involved in the design of ethical, nonexploitative research projects with sex workers or any other marginalized population are significant. First, the size and boundaries of the population are unknown, making it extremely difficult to get a representative sample. Second, because membership in hidden populations often involves…
Ethics and epidemiological research | Cullinan | Malawi Medical ...
African Journals Online (AJOL)
Malawi Medical Journal. Journal Home · ABOUT · Advanced Search · Current Issue · Archives · Journal Home > Vol 8, No 2 (1992) >. Log in or Register to get access to full text downloads. Username, Password, Remember me, or Register. Ethics and epidemiological research. T Cullinan. Abstract. No Abstract. Full Text:.
Children in Medical Research : Ethical challenges
W. Bos (Wendy)
markdownabstractPaediatric research ethics evolves around a central dilemma. Either one has to accept that many childhood diseases cannot be (properly) treated and that many children receive treatments that are not (properly) tested in children, or one has to accept that children, i.e. vulnerable
Caring-ethical phronetic research: Epistemological considerations
DEFF Research Database (Denmark)
Delmar, Charlotte
values, caring ethical practice, and power relations experience difficulties if the knowledge generated by their research is judged on the basis of "science as usual." In order to elucidate this problem, the Socratic epistemological theory is discussed, particularly in light of Flyvbjerg's (2001) theory...
'Wicked' ethics: Compliance work and the practice of ethics in HIV research.
Heimer, Carol A
Using ethnographic material collected between 2003 and 2007 in five HIV clinics in the US, South Africa, Uganda, and Thailand, this article examines "official ethics" and "ethics on the ground." It compares the ethical conundrums clinic staff and researchers confront in their daily work as HIV researchers with the dilemmas officially identified as ethical issues by bioethicists and people responsible for ethics reviews and compliance with ethics regulations. The tangled relation between ethical problems and solutions invites a comparison to Rittel and Webber's "wicked problems." Official ethics' attempts to produce universal solutions often make ethics problems even more wickedly intractable. Ethics on the ground is in part a reaction to this intractability. Copyright © 2012 Elsevier Ltd. All rights reserved.
Future global ethics: environmental change, embedded ethics, evolving human identity.
D.R. Gasper (Des)
markdownabstract__Abstract__ Work on global ethics looks at ethical connections on a global scale. It should link closely to environmental ethics, recognizing that we live in unified social-ecological systems, and to development ethics, attending systematically to the lives and interests of
Ethics research in critically ill patients.
Estella, A
Research in critical care patients is an ethical obligation. The ethical conflicts of intensive care research arise from patient vulnerability, since during ICU admission these individuals sometimes lose all or part of their decision making capacity and autonomy. We therefore must dedicate effort to ensure that neither treatment (sedation or mechanical ventilation) nor the disease itself can affect the right to individual freedom of the participants in research, improving the conditions under which informed consent must be obtained. Fragility, understood as a decrease in the capacity to tolerate adverse effects derived from research must be taken into account in selecting the participants. Research should be relevant, not possible to carry out in non-critical patients, and a priori should offer potential benefits that outweigh the risks that must be known and assumable, based on principles of responsibility. Copyright © 2017. Publicado por Elsevier España, S.L.U.
Ethics and Epistemology in Big Data Research.
Lipworth, Wendy; Mason, Paul H; Kerridge, Ian; Ioannidis, John P A
Biomedical innovation and translation are increasingly emphasizing research using "big data." The hope is that big data methods will both speed up research and make its results more applicable to "real-world" patients and health services. While big data research has been embraced by scientists, politicians, industry, and the public, numerous ethical, organizational, and technical/methodological concerns have also been raised. With respect to technical and methodological concerns, there is a view that these will be resolved through sophisticated information technologies, predictive algorithms, and data analysis techniques. While such advances will likely go some way towards resolving technical and methodological issues, we believe that the epistemological issues raised by big data research have important ethical implications and raise questions about the very possibility of big data research achieving its goals.
Ethics in research involving prisoners.
Pont, Jörg
Research involving prisoners repeatedly went astray during the last century, culminating in the cruel medical experiments inside the Nazi concentration camps that gave rise to the Nuremberg Code. However, prisoners continued to become victims of scientific exploitation by the rapidly evolving biomedical research industry. The common roots of these abuses were the flawed philosophy that the needs of the society outweigh the needs of the individual and the researchers' view that prisoners are cheap, easy to motivate and stable research subjects. Prisoners are vulnerable to exploitation and abuse by research because their freedom for consent can easily be undermined, and because of learning disabilities, illiteracy and language barriers prevailing within prisoner populations. Therefore, penal laws of some countries supported by a number of internationally agreed documents prohibit research involving prisoners completely. However, prisoners must also be regarded as vulnerable to the specific health problems in prisons, e.g. transmissible diseases, mental disorders and suicide - problems that need to be addressed by research involving prisoners. Additionally, the participation of prisoner patients in research they directly can benefit from should be provided. Hence, it must be a common objective to find the right balance between protection from exploitation and access to research beneficial to prisoners.
The human embryo: ethical and legal aspects.
Knoppers, Bartha Maria; Bordet, Sylvie; Isasi, Rosario
This paper analyses the status of the embryo in Canadian law. First, a brief overview of some ethical issues raised by research with embryos, focusing on the moral status of the embryo, is presented. A survey of the regulatory framework applicable to embryo research in Canada follows, so as to delineate the legal status of the embryo in Canada and its ethical underpinnings. A summary of applicable regulation in Germany, the United Kingdom, and the United States is also undertaken, illustrating the lack of consensus on this issue in Western countries. Finally, recent developments in stem cell research are considered, focusing on current alternatives to embryo destruction.
Custodianship as an Ethical Framework for Biospecimen-Based Research
Yassin, Rihab; Lockhart, Nicole; Riego, Mariana González del; Pitt, Karen; Thomas, Jeffrey W.; Weiss, Linda; Compton, Carolyn
Human biological specimens (biospecimens) are increasingly important for research that aims to advance human health. Yet, despite significant proliferation in specimen-based research and discoveries during the past decade, researchremains challenged by the inequitable access to high quality biospecimens that are collected under rigorous ethical standards. This is primarily caused by the complex level of control and ownership exerted by the myriad of stakeholders involved in the biospecimen research process. This article discusses the ethical model of custodianship as a framework for biospecimen-based research to promote fair research access and resolve issues of control and potential conflicts between biobanks**, investigators, human research participants (human subjects), and sponsors. Custodianship is the caretaking obligation for biospecimens from initial collection to final dissemination of research findings. It endorses key practices and operating principles for responsible oversight of biospecimens collected for research. Embracing the custodial model would ensure transparency in research, fairness to human research participants, and shared accountability among all stakeholders involved in biospecimen-based research. PMID:20332272
Human Genome Editing and Ethical Considerations.
Krishan, Kewal; Kanchan, Tanuj; Singh, Bahadur
Editing human germline genes may act as boon in some genetic and other disorders. Recent editing of the genome of the human embryo with the CRISPR/Cas9 editing tool generated a debate amongst top scientists of the world for the ethical considerations regarding its effect on the future generations. It needs to be seen as to what transformation human gene editing brings to humankind in the times to come.
In defence of governance: ethics review and social research.
Sheehan, Mark; Dunn, Michael; Sahan, Kate
There is a growing body of literature that has sought to undermine systems of ethical regulation, and governance more generally, within the social sciences. In this paper, we argue that any general claim for a system of research ethics governance in social research depends on clarifying the nature of the stake that society has in research. We show that certain accounts of this stake-protecting researchers' freedoms; ensuring accountability for resources; safeguarding welfare; and supporting democracy-raise relevant ethical considerations that are reasonably contested. However, these accounts cannot underpin a general claim in favour of, or against, a system of research ethics governance. Instead, we defend governance in social research on the grounds that research, as an institutionalised form of enquiry, is a constitutive element of human flourishing, and that society ought to be concerned with the flourishing of its members. We conclude by considering the governance arrangements that follow from, and are justified by, our arguments. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
Payment of research participants: current practice and policies of Irish research ethics committees.
LENUS (Irish Health Repository)
Roche, Eric
Payment of research participants helps to increase recruitment for research studies, but can pose ethical dilemmas. Research ethics committees (RECs) have a centrally important role in guiding this practice, but standardisation of the ethical approval process in Ireland is lacking.
Towards Ethical Decision-Making in Counselling Research.
Robson, Maggie; Cook, Peter; Hunt, Kathy; Alred, Geof; Robson, Dave
Explores the process of ethical decision-making in counseling research and examines to what extent decision-making is based on intuitive thinking. Reviews and considers several models of ethical problem solving. Argues that ethical decisions are reached through intuition, informed by ethical principles, codes of practice, and reference to the laws…
Research Award: Advisory Committee on Research Ethics Deadline ...
International Development Research Centre (IDRC) Digital Library (Canada)
Jean-Claude Dumais
Research Award: Advisory Committee on Research Ethics. Deadline: 12 September 2012. Please note that all applications must be sent electronically. IDRC's Research Awards are a unique opportunity for master's and doctoral-level students, as well as recent graduates to enhance their research skills and gain a fresh ...
What changes are there in decisions by the Wits Human Research Ethics Committee (Medical) and in process errors by research applicants between 2003 and 2015?
National Research Council Canada - National Science Library
Cleaton-Jones, Peter
Objective. A retrospective examination of numbers of applications, decision rates, and process errors in 2015 was done for comparison with earlier studies to understand current ethics secretariat workload. Methods...
"Goodbye Dolly?" The ethics of human cloning.
Harris, J
The ethical implications of human clones have been much alluded to, but have seldom been examined with any rigour. This paper examines the possible uses and abuses of human cloning and draws out the principal ethical dimensions, both of what might be done and its meaning. The paper examines some of the major public and official responses to cloning by authorities such as President Clinton, the World Health Organisation, the European parliament, UNESCO, and others and reveals their inadequacies as foundations for a coherent public policy on human cloning. The paper ends by defending a conception of reproductive rights of "procreative autonomy" which shows human cloning to be not inconsistent with human rights and dignity. PMID:9451604
The ethos and ethics of translational research.
Maienschein, Jane; Sunderland, Mary; Ankeny, Rachel A; Robert, Jason Scott
Calls for the "translation" of research from bench to bedside are increasingly demanding. What is translation, and why does it matter? We sketch the recent history of outcome-oriented translational research in the United States, with a particular focus on the Roadmap Initiative of the National Institutes of Health (Bethesda, MD). Our main example of contemporary translational research is stem cell research, which has superseded genomics as the translational object of choice. We explore the nature of and obstacles to translational research and assess the ethical and biomedical challenges of embracing a translational ethos.
Healthy ageing, narrative method and research ethics.
Sarvimäki, Anneli
The purpose of this article is to describe research and teaching activities related to healthy ageing, narrative methods and research ethics at the Nordic School of Public Health NHV during 1999 - 2012. Healthy ageing was conceived in terms of The World Health Organization's (WHO) model of active ageing and of quality of life defined as a sense of well-being, meaning and value. Qualitative research on ageing and health conducted at NHV showed how elderly people themselves experience health and what they perceive to be health promoting. Narrative method was one the qualitative methods used in research at NHV. By adopting holistic and categorical content analysis the life stories of elderly Finnish migrants, the stories of home-dwelling persons about falls, and working persons' stories of alcohol use were studied. The courses on research ethics took their point of departure in a model that describes the role of scientific, economic, aesthetic and ethical values in research. © 2015 the Nordic Societies of Public Health.
Research ethics and integrity for social scientists beyond regulatory compliance
Israel, Mark
This book explores recent developments and debates around researching ethically and with integrity, and complying with ethical requirements, and has been updated and expanded to now cover issues relating to international, indigenous, interdisciplinary and internet research.
"Ethics and Clinical Research" in Biographical Perspective.
Lederer, Susan E
Henry K. Beecher (1904-1976) played an important role in the development of bioethics. His 1966 article "Ethics and Clinical Research" in the New England Journal of Medicine intensified concern about the welfare of patients participating in clinical research, and his leadership in the 1968 Harvard Ad Hoc Committee on Brain Death redefined the determination of death. Beecher deserves, and even demands, explanation and explication. This essay offers a biographical perspective on the Harvard professor. In addition to his early life and education in both Kansas and Boston, the essay explores how Beecher's experiences in World War II and in the new geopolitical realities of the Cold War shaped his views about the ethical dilemmas of clinical research.
The main elements of Erich Fromm's humane ethic
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Redžić Saduša
Full Text Available Erich Fromm contributed to social science mostly by his detailed theory of social character. Besides, he was interested in ethics. Even more - considering Fromm, human nature is strictly connected with ethics. He asks if there is foundation to establish some universal, absolute ethic? What is authority, and is there a connection between authority and ethics, and humanity and ethics? Is character of any relevance to ethics? Is human good or bad? What is the connection between human nature and social value? Fromm defines terms clearly, and this paper is brief introduction to those terms and to answers that Fromm gave to upper questions.
The ethics in qualitative health research: special considerations.
Peter, Elizabeth
A sound knowledge of the nature of qualitative research, along with an appreciation of some special ethical considerations, is needed for rigorous reviews to be conducted. The overall character of qualitative research is described with an emphasis on the tendency of qualitative researchers to explore sensitive topics using theoretically informed methods. A number of specific features of qualitative that require additional ethical attention and awareness are also examined including the following: 1) participants are frequently quite vulnerable and require protection because the data collection methods, such as in-depth interviews, can delve into personally and politically charged matters; 2) naturalistic observation can raise concerns regarding privacy and consent; 3) the potential for the identifiability of the results of this research may require extra efforts to maintain confidentiality. Ultimately, Reseach Ethics Committee members must be knowledgeable about qualitative approaches to be able to assess the potential harms and benefits in a protocol carefully. Without this knowledge gaining ethics approval can be overly difficult for researchers and the best practices for protecting human participants can be overlooked.
The ethics in qualitative health research: special considerations
Directory of Open Access Journals (Sweden)
Elizabeth Peter
Full Text Available Abstract A sound knowledge of the nature of qualitative research, along with an appreciation of some special ethical considerations, is needed for rigorous reviews to be conducted. The overall character of qualitative research is described with an emphasis on the tendency of qualitative researchers to explore sensitive topics using theoretically informed methods. A number of specific features of qualitative that require additional ethical attention and awareness are also examined including the following: 1 participants are frequently quite vulnerable and require protection because the data collection methods, such as in-depth interviews, can delve into personally and politically charged matters; 2 naturalistic observation can raise concerns regarding privacy and consent; 3 the potential for the identifiability of the results of this research may require extra efforts to maintain confidentiality. Ultimately, Reseach Ethics Committee members must be knowledgeable about qualitative approaches to be able to assess the potential harms and benefits in a protocol carefully. Without this knowledge gaining ethics approval can be overly difficult for researchers and the best practices for protecting human participants can be overlooked.
Ethics of conducting research in conflict settings
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Mills Edward J
Full Text Available Abstract Humanitarian agencies are increasingly engaged in research in conflict and post-conflict settings. This is justified by the need to improve the quality of assistance provided in these settings and to collect evidence of the highest standard to inform advocacy and policy change. The instability of conflict-affected areas, and the heightened vulnerability of populations caught in conflict, calls for careful consideration of the research methods employed, the levels of evidence sought, and ethical requirements. Special attention needs to be placed on the feasibility and necessity of doing research in conflict-settings, and the harm-benefit ratio for potential research participants.
Staunch protections: the ethics of haemophilia gene transfer research.
Kimmelman, J
Haemophilia has long been considered an ideal system for validating human gene transfer (GT). However, haemophilia GT trials present a particular ethical challenge because they involve subjects whose medical condition is stabilized by standard therapies. Below, I review the ethics and risks of haemophilia GT clinical research. I propose several conditions and practices that strengthen the ethical basis for such trials. These include consultation with haemophilia advocacy organizations as trials are designed and executed, high standards of supporting evidence before trials are initiated, pretrial publication of this evidence, and the offer of indemnification for participants. I further argue against the conduct of paediatric haemophilia GT studies at this time, and raise questions about the fairness of recruiting economically disadvantaged subjects into studies that are primarily directed towards the health needs of persons in the developed world.
A review of Indian psychiatry research and ethics
Agarwal, A. K.
Ethics does not seem to be a favorite topic of Indian authors. Electronic search of the IJP web site could only identify six articles which were directly related to ethics. One article discussed the relationship of ethics religion and psychiatry. Another editorial discussed the concept of responsibility in psychiatrists. Other editorial discussed the truth about 'truth serum' in legal investigations. One article discussed the ethical aspects of published research. There were two articles that specifically discussed ethical aspects. This write-up provides some details about the ethical aspects of psychiatric practice, specific to India, and emphasizes the need to rediscover ethics in India. PMID:21836698
Research Ethics III: Publication Practices and Authorship, Conflicts of Interest, and Research Misconduct
Horner, Jennifer; Minifie, Fred D.
Purpose: In this series of articles--"Research Ethics I", "Research Ethics II", and "Research Ethics III"--the authors provide a comprehensive review of the 9 core domains for the responsible conduct of research (RCR) as articulated by the Office of Research Integrity. Method: In "Research Ethics III", they review the RCR domains of publication…
An ethic of analysis: an argument for critical analysis of research interviews as an ethical practice.
Cloyes, Kristin Gates
Nursing literature is replete with discussions about the ethics of research interviews. These largely involve questions of method, and how careful study design and data collection technique can render studies more ethical. Analysis, the perennial black box of the research process, is rarely discussed as an ethical practice. In this paper, I introduce the idea that analysis itself is an ethical practice. Specifically, I argue that political discourse analysis of research interviews is an ethical practice. I use examples from my own research in a prison control unit to illustrate what this might look like, and what is at stake.
Sex work research: methodological and ethical challenges.
Shaver, Frances M
The challenges involved in the design of ethical, nonexploitative research projects with sex workers or any other marginalized population are significant. First, the size and boundaries of the population are unknown, making it extremely difficult to get a representative sample. Second, because membership in hidden populations often involves stigmatized or illegal behavior, concerns regarding privacy and confidentiality are paramount and difficult to resolve. In addition, they often result in challenges to the validity of the data. Third, in spite of evidence to the contrary, associations between sex work and victimization are still strong, dichotomies remain prevalent, and sex workers are often represented as a homogeneous population. Drawing on three research projects in which the author has been involved-all grounded in a sex-as-work approach-as well as the work of others, this article provides several strategies for overcoming these challenges. Clear guidelines for ethical, nonexploitive methodologies are embedded in the solutions provided.
Ethical aspects of genome diversity research: genome research into cultural diversity or cultural diversity in genome research?
Ilkilic, Ilhan; Paul, Norbert W
The goal of the Human Genome Diversity Project (HGDP) was to reconstruct the history of human evolution and the historical and geographical distribution of populations with the help of scientific research. Through this kind of research, the entire spectrum of genetic diversity to be found in the human species was to be explored with the hope of generating a better understanding of the history of humankind. An important part of this genome diversity research consists in taking blood and tissue samples from indigenous populations. For various reasons, it has not been possible to execute this project in the planned scope and form to date. Nevertheless, genomic diversity research addresses complex issues which prove to be highly relevant from the perspective of research ethics, transcultural medical ethics, and cultural philosophy. In the article at hand, we discuss these ethical issues as illustrated by the HGDP. This investigation focuses on the confrontation of culturally diverse images of humans and their cosmologies within the framework of genome diversity research and the ethical questions it raises. We argue that in addition to complex questions pertaining to research ethics such as informed consent and autonomy of probands, genome diversity research also has a cultural-philosophical, meta-ethical, and phenomenological dimension which must be taken into account in ethical discourses. Acknowledging this fact, we attempt to show the limits of current guidelines used in international genome diversity studies, following this up by a formulation of theses designed to facilitate an appropriate inquiry and ethical evaluation of intercultural dimensions of genome research.
Reflections on Ethics and Humanity in Pediatric Neurology: the Value of Recognizing Ethical Issues in Common Clinical Practice.
Ronen, Gabriel M; Rosenbaum, Peter L
Our goals in this reflection are to (i) identify the ethical dimensions inherent in any clinical encounter and (ii) bring to the forefront of our pediatric neurology practice the myriad of opportunities to explore and learn from these ethical questions. We highlight specifically Beauchamp and Childress's principles of biomedical ethics. We use the terms ethics in common clinical practice and an ethical lens to remind people of the ubiquity of ethical situations and the usefulness of using existing ethical principles to analyze and resolve difficult situations in clinical practice. We start with a few common situations with which many of us tend to struggle. We describe what we understand as ethics and how and why developments in technology, novel potential interventions, policies, and societal perspectives challenge us to think about and debate ethical issues. Individual patients are not a singular population; each patient has their own unique life situations, culture, goals, and expectations that need to be considered with a good dose of humanity and humility. We believe that using an ethical lens-by which we mean making an explicit effort to identify and consider these issues openly-will help us to achieve this goal in practice, education, and research.
Ethics and research priorities in academic administration.
Yeaworth, R C
Deans and directors of nursing education programs have primary responsibility for budgets even though different programs vary in the advising and recommending power given to committees. With research needing greater emphasis, especially in schools with graduate programs, and budgets at all levels facing minimal increases or cutbacks, nursing deans are faced with difficult decisions in securing and allocating monies for research. Many faculty view decisions and allocations only at the micro level of who gets money for what and do not consider these decisions from the perspective of how they are influenced by such macro-level considerations as restructuring of health care, the downsizing of educational programs, and the strategic plans of their own institution and granting agencies. In this article an attempt was made to consider both the macro and micro levels and to select from several ethical theories such principles as caring, utility, justice, and faithfulness to illustrate how the decisions can be guided by ethical principles. Ethics of caring can be seen as a guide in research development. Utility is about the only justification for downsizing and restructuring. The expectations of higher administration, faculty, students, and alumni may create dilemmas in regard to faithfulness. Distributive justice provides guidance for the distribution of scarce resources.
Toward ethical research practice with deaf participants.
Singleton, Jenny L; Jones, Gabrielle; Hanumantha, Shilpa
In recent years, scholars have been critical of what they consider unethical conduct by researchers whose studies focus on members of the Deaf or signing communities. This is the first empirical study that investigates ethical concerns and recommendations from the perspective of three stakeholder groups (Deaf research participants, researchers, and Deaf studies experts). We analyzed focus group discussions using strategies from grounded theory and community-based participatory research. The themes we identified highlight the need for the broader scientific research community to include linguistically and culturally sensitive research procedures that more adequately protect the rights of Deaf research participants, as well as other marginalized groups. We address the need to increase the number of Deaf scientists and reconsider collaboration practices between Deaf and hearing researchers. © The Author(s) 2014.
Research Ethics with Undergraduates in Summer Research Training Programs
Cheung, I.; Yalcin, K.
Many undergraduate research training programs incorporate research ethics into their programs and some are required. Engaging students in conversations around challenging topics such as conflict of interest, cultural and gender biases, what is science and what is normative science can difficult in newly formed student cohorts. In addition, discussing topics with more distant impacts such as science and policy, intellectual property and authorship, can be difficult for students in their first research experience that have more immediate concerns about plagiarism, data manipulation, and the student/faculty relationship. Oregon State University's Research Experience for Undergraduates (REU) in Ocean Sciences: From Estuaries to the Deep Sea as one model for incorporating a research ethics component into summer undergraduate research training programs. Weaved into the 10-week REU program, undergraduate interns participate in a series of conversations and a faculty mentor panel focused on research ethics. Topics discussed are in a framework for sharing myths, knowledge and personal experiences on issues in research with ethical implications. The series follows guidelines and case studies outlined from the text, On Being A Scientist: Responsible Conduct In Research Committee on Science, Engineering, and Public Policy, National Academy of Sciences.
Directory of Open Access Journals (Sweden)
Neyda Ibañez
Full Text Available The purpose of the investigation was to interpret training in ethics for action business students an introduction to the economy of the Faculty of Social and Economic Sciences at the University of Carabobo, as part of professional development in business studies. The investigation was addressed within the paradigm post positivist using ethnographic and hermeneutic method, descriptive mode of scientific research and technique participant-observation. It concludes that training in ethics management must transcend the economic theories located in the teleological by financial or economic interests toward the teleological including humanism.
Do People with Intellectual Disability Require Special Human Subjects Research Protections? The Interplay of History, Ethics, and Policy
Feudtner, Chris; Brosco, Jeffrey P.
People with intellectual disability (ID) have a long history of discrimination and stigmatization, and a more recent history of pride and self-advocacy. The early history suggests that people with ID are a vulnerable population and deserve special research protections as do some other groups; the disability rights movement of the late 20th century…
Development and oversight of ethical health promotion quality assurance and evaluation activities involving human participants.
Sainsbury, Peter
This paper considers the role of ethics and ethics review processes in the development of health promotion quality assurance and evaluation activities involving human participants. The Australian National Health and Medical Research Council (NHMRC) National Statement on Ethical Conduct in Human Research and associated documents provide the framework for the ethical conduct and independent review of research (including quality assurance and evaluation) involving humans in Australia. Identifying the level of risk to which participants may be exposed by participation in quality assurance and evaluation activities is essential for health promotion workers undertaking such activities. Organisations can establish processes other than review by a Human Research Ethics Committee for negligible and low risk research activities. Health promotion quality assurance and evaluation activities often involve negligible and low risk to participants. Seven triggers that indicate the need for ethics review of quality assurance and evaluation activities and a procedural checklist for developing ethical quality assurance and evaluation activities are provided. Health promotion workers should be familiar with the NHMRC's National Statement on Ethical Conduct in Human Research. When ethical considerations underpin the planning and conduct of all quality assurance and evaluation from the very beginning, the activity is the better for it, independent 'ethics approval' can mostly be secured without much trouble and workers' frustration levels are reduced. So what? Health promotion quality assurance and evaluation activities must be ethically justified. Health promotion workers should be familiar with the NHMRC's National Statement on Ethical Conduct in Human Research and should use it when developing health promotion quality assurance and evaluation activities.
Familiar ethical issues amplified: how members of research ethics committees describe ethical distinctions between disaster and non-disaster research.
Tansey, Catherine M; Anderson, James; Boulanger, Renaud F; Eckenwiler, Lisa; Pringle, John; Schwartz, Lisa; Hunt, Matthew
The conduct of research in settings affected by disasters such as hurricanes, floods and earthquakes is challenging, particularly when infrastructures and resources were already limited pre-disaster. However, since post-disaster research is essential to the improvement of the humanitarian response, it is important that adequate research ethics oversight be available. We aim to answer the following questions: 1) what do research ethics committee (REC) members who have reviewed research protocols to be conducted following disasters in low- and middle-income countries (LMICs) perceive as the key ethical concerns associated with disaster research?, and 2) in what ways do REC members understand these concerns to be distinct from those arising in research conducted in non-crisis situations? This qualitative study was developed using interpretative description methodology; 15 interviews were conducted with REC members. Four key ethical issues were identified as presenting distinctive considerations for disaster research to be implemented in LMICs, and were described by participants as familiar research ethics issues that were amplified in these contexts. First, REC members viewed disaster research as having strong social value due to its potential for improving disaster response, but also as requiring a higher level of justification compared to other research settings. Second, they identified vulnerability as an overarching concern for disaster research ethics, and a feature that required careful and critical appraisal when assessing protocols. They noted that research participants' vulnerabilities frequently change in the aftermath of a disaster and often in unpredictable ways. Third, they identified concerns related to promoting and maintaining safety, confidentiality and data security in insecure or austere environments. Lastly, though REC members endorsed the need and usefulness of community engagement, they noted that there are significant challenges in a disaster
Ethical Challenges in Infant Feeding Research
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Colin Binns
Full Text Available Infants have a complex set of nutrient requirements to meet the demands of their high metabolic rate, growth, and immunological and cognitive development. Infant nutrition lays the foundation for health throughout life. While infant feeding research is essential, it must be conducted to the highest ethical standards. The objective of this paper is to discuss the implications of developments in infant nutrition for the ethics of infant feeding research and the implications for obtaining informed consent. A search was undertaken of the papers in the medical literature using the PubMed, Science Direct, Web of Knowledge, Proquest, and CINAHL databases. From a total of 9303 papers identified, the full text of 87 articles that contained discussion of issues in consent in infant feeding trials were obtained and read and after further screening 42 papers were included in the results and discussion. Recent developments in infant nutrition of significance to ethics assessment include the improved survival of low birth weight infants, increasing evidence of the value of breastfeeding and evidence of the lifelong importance of infant feeding and development in the first 1000 days of life in chronic disease epidemiology. Informed consent is a difficult issue, but should always include information on the value of preserving breastfeeding options. Project monitoring should be cognisant of the long term implications of growth rates and early life nutrition.
Developing Ethics and Standards in Action Research
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Ben Boog
Full Text Available In a globalizing world, what role can social science research – particularly action research – play in order to address the risks of exclusion, poverty, social and physical insecurity and environmental deprivation? More specifically, how can this type of research be conducted in a participatory, responsible, transparent and scientific way? In other words: what about the ethics and standards in action research? This was the main focus of the World Congress on Action Research and Action Learning (August 2006 organized by the University of Groningen and the Higher Education Group of the Northern Netherlands. We begin by discussing the core characteristics of action research with reference to theory and practice. Reflection and action are key constituents of the process through the enactment of action research. The middle section draws upon the research findings presented at the congress and published in a book [B. Boog, J. Preece, M. Slagter and J. Zeelen (Eds. (2008 Towards Quality Improvement of Action Research. Developing Ethics and Standards, Rotterdam/Taipei: Sense Publishers]. Citing authors who contributed chapters to the book mentioned above, we analyze four important subthemes: 'participation, power and rapport'; 'quality of research and quality management'; 'learning to solve your own problems in complex responsive social systems, and 'heuristics (rules of thumb for action research practice'. Finally, we comment on possible quality improvements for action research. Our remarks relate to the problems of implementing the concept of participation, the ambition of action research to contribute to both knowledge production and social change and the need for systematic reconstruction (scientific validation of action research.
The ethics of human reproductive cloning.
Strong, Carson
This article addresses the question of whether human reproductive cloning could be ethically justifiable in at least some cases involving infertile couples who would choose cloning as a way to have a genetically related child. At present, the risk of congenital anomalies constitutes a compelling argument against human reproductive cloning. The article explores whether reproductive cloning could be ethically justifiable if, at some future time, cloning becomes possible without an elevated risk of anomalies. It is argued that freedom to use cloning is a form of procreative freedom and, as such, deserves respect. All of the objections that have been raised against human reproductive cloning fall under three main categories: those that appeal to the interests of the child, those based on consequences for society, and those arising from teleological views. Objections that appeal to the child's interests are, in turn, of two main kinds: consequentialist and deontological. All of these types of objections are examined, and it is found that each involves serious problems that prevent it from being a reasonable objection in the context of the infertility cases considered. It is concluded that human reproductive cloning would be ethically justifiable in at least some cases involving infertile couples, provided that it could be performed without an elevated risk of anomalies.
The "Subject of Ethics" and Educational Research OR Ethics or Politics? Yes Please!
Bazzul, Jesse
This paper outlines a theoretical context for research into "the subject of ethics" in terms of how students come to see themselves as self-reflective actors. I maintain that the "subject of ethics," or ethical subjectivity, has been overlooked as a necessary aspect of creating politically transformative spaces in education. At…
Research Ethics Capacity Building in Sub-Saharan Africa: A Review of NIH Fogarty-Funded Programs 2000–2012
Ndebele, Paul; Wassenaar, Douglas; Benatar, Solomon; Fleischer, Theodore; Kruger, Mariana; Adebamowo, Clement; Kass, Nancy; Hyder, Adnan A.; Meslin, Eric M.
The last fifteen years have witnessed a significant increase in investment in research ethics capacity development throughout the world. We examine nine research ethics training programs that are focused on Sub-Saharan Africa and supported by the US National Institutes of Health. We collected data from grants awards' documents and annual reports supplemented by questionnaires completed by the training program directors. Together, these programs provided long-term training in research ethics to 275 African professionals, strengthened research ethics committees in 19 countries in Sub-Saharan Africa, and created research ethics curricula at many institutions and bioethics centers within Africa. Trainees' leadership resulted in new national systems and policies on research ethics, human tissue storage and export, and methods of monitoring compliance with research ethics guidelines. Training programs adapted to challenges that arose due to varied trainees' background knowledge in ethics, duration of time available for training, spoken and written English language skills, administrative obstacles, and the need to sustain post-training research ethics activities. Our report showcases the development of awareness of research ethics and building/strengthening of basic research ethics infrastructure in Sub-Saharan Africa. Nevertheless, the increasing amount and complexity of health research being conducted in Sub-Saharan Africa suggests the need for continued investment in research ethics capacity development in this region. This paper is part of a collection of papers analyzing the Fogarty International Center's International Research Ethics Education and Curriculum Development program. PMID:24782070
The ethics of psychopharmacological research in legal minors
Directory of Open Access Journals (Sweden)
Koelch Michael
Full Text Available Abstract Research in psychopharmacology for children and adolescents is fraught with ethical problems and tensions. This has practical consequences as it leads to a paucity of the research that is essential to support the treatment of this vulnerable group. In this article, we will discuss some of the ethical issues which are relevant to such research, and explore their implications for both research and standard care. We suggest that finding a way forward requires a willingness to acknowledge and discuss the inherent conflicts between the ethical principles involved. Furthermore, in order to facilitate more, ethically sound psychopharmacology research in children and adolescents, we suggest more ethical analysis, empirical ethics research and ethics input built into psychopharmacological research design.
A Theoretical Framework for Human and Veterinary Medical Ethics Education
Magalhães-Sant'Ana, Manuel
In their practice, physicians and veterinarians need to resort to an array of ethical competences. As a teaching topic, however, there is no accepted gold standard for human medical ethics, and veterinary medical ethics is not yet well established. This paper provides a reflection on the underlying aims of human and veterinary medical ethics…
Ethical issues in research with abused children.
Kinard, E M
This paper discusses sensitive ethical issues encountered in conducting research with abused children and the potential consequences of various methods of handling these dilemmas. Important ethical questions arise at three stages of the research: (1) obtaining consent for participation in the research; (2) conducting interviews with or administering tests to the subjects; and (3) providing information about test results to parents or others outside the research team. Concern with children's rights has been extended to the question of who can give consent for children to participate in research. In the case of abused children, the consent issue is complicated by the potential adversarial relationship between abusing parent and abused child. Procedures for interviewing or testing abused children must include provisions for three special situations: (1) when a child is distressed by the interviewing or testing; (2) when a child's answers or test results indicate emotional problems; and (3) when a child's answers or comments indicate that the child is being abused. Decisions concerning whether to inform parents or others about an individual child's answers must balance the parents' right to know against the child's right to privacy. All these circumstances require serious deliberation concerning the role and responsibility of the research investigator.
Ethical issues in stem cell research and therapy.
King, Nancy Mp; Perrin, Jacob
Rapid progress in biotechnology has introduced a host of pressing ethical and policy issues pertaining to stem cell research. In this review, we provide an overview of the most significant issues with which the stem cell research community should be familiar. We draw on a sample of the bioethics and scientific literatures to address issues that are specific to stem cell research and therapy, as well as issues that are important for stem cell research and therapy but also for translational research in related fields, and issues that apply to all clinical research and therapy. Although debate about the moral status of the embryo in human embryonic stem cell research continues to have relevance, the discovery of other highly multipotent stem cell types and alternative methods of isolating and creating highly multipotent stem cells has raised new questions and concerns. Induced pluripotent stem cells hold great promise, but care is needed to ensure their safety in translational clinical trials, despite the temptation to move quickly from bench to bedside. A variety of highly multipotent stem cells - such as mesenchymal stem/stromal cells and stem cells derived from amniotic fluid, umbilical cord blood, adipose tissue, or urine - present the opportunity for widespread biobanking and increased access. With these increased opportunities, however, come pressing policy issues of consent, control, and justice. The imperatives to minimize risks of harm, obtain informed consent, reduce the likelihood of the therapeutic misconception, and facilitate sound translation from bench to bedside are not unique to stem cell research; their application to stem cell research and therapy nonetheless merits particular attention. Because stem cell research is both scientifically promising and ethically challenging, both the application of existing ethical frameworks and careful consideration of new ethical implications are necessary as this broad and diverse field moves forward.
No ethical bypass of moral status in stem cell research.
Brown, Mark
Recent advances in reprogramming technology do not bypass the ethical challenge of embryo sacrifice. Induced pluripotent stem cell (iPS) research has been and almost certainly will continue to be conducted within the context of embryo sacrifice. If human embryos have moral status as human beings, then participation in iPS research renders one morally complicit in their destruction; if human embryos have moral status as mere precursors of human beings, then advocacy of iPS research policy that is inhibited by embryo sacrifice concerns renders one morally complicit in avoidable harms to persons. Steps may be taken to address these complicity concerns, but in the final analysis there is no alternative to achieving clarity with respect to the moral status of the human embryo. © 2011 Blackwell Publishing Ltd.
Code of ethics for dental researchers.
The International Association for Dental Research, in 2009, adopted a code of ethics. The code applies to members of the association and is enforceable by sanction, with the stated requirement that members are expected to inform the association in cases where they believe misconduct has occurred. The IADR code goes beyond the Belmont and Helsinki statements by virtue of covering animal research. It also addresses issues of sponsorship of research and conflicts of interest, international collaborative research, duty of researchers to be informed about applicable norms, standards of publication (including plagiarism), and the obligation of "whistleblowing" for the sake of maintaining the integrity of the dental research enterprise as a whole. The code is organized, like the ADA code, into two sections. The IADR principles are stated, but not defined, and number 12, instead of the ADA's five. The second section consists of "best practices," which are specific statements of expected or interdicted activities. The short list of definitions is useful.
The Emergence of Clinical Research Ethics Consultation: Insights From a National Collaborative.
Porter, Kathryn M; Danis, Marion; Taylor, Holly A; Cho, Mildred K; Wilfond, Benjamin S
The increasing complexity of human subjects research and its oversight has prompted researchers, as well as institutional review boards (IRBs), to have a forum in which to discuss challenging or novel ethical issues not fully addressed by regulations. Research ethics consultation (REC) services provide such a forum. In this article, we rely on the experiences of a national Research Ethics Consultation Collaborative that collected more than 350 research ethics consultations in a repository and published 18 challenging cases with accompanying ethical commentaries to highlight four contexts in which REC can be a valuable resource. REC assists: 1) investigators before and after the regulatory review; 2) investigators, IRBs, and other research administrators facing challenging and novel ethical issues; 3) IRBs and investigators with the increasing challenges of informed consent and risk/benefit analysis; and 4) in providing flexible and collaborative assistance to overcome study hurdles, mediate conflicts within a team, or directly engage with research participants. Institutions that have established, or plan to establish, REC services should work to raise the visibility of their service and engage in open communication with existing clinical ethics consult services as well as the IRB. While the IRB system remains the foundation for the ethical review of research, REC can be a valuable service for investigators, regulators, and research participants aligned with the goal of supporting ethical research.
Ethical Guidelines for Computer Security Researchers: "Be Reasonable"
Sassaman, Len
For most of its existence, the field of computer science has been lucky enough to avoid ethical dilemmas by virtue of its relatively benign nature. The subdisciplines of programming methodology research, microprocessor design, and so forth have little room for the greater questions of human harm. Other, more recently developed sub-disciplines, such as data mining, social network analysis, behavioral profiling, and general computer security, however, open the door to abuse of users by practitioners and researchers. It is therefore the duty of the men and women who chart the course of these fields to set rules for themselves regarding what sorts of actions on their part are to be considered acceptable and what should be avoided or handled with caution out of ethical concerns. This paper deals solely with the issues faced by computer security researchers, be they vulnerability analysts, privacy system designers, malware experts, or reverse engineers.
Human genome and open source: balancing ethics and business.
Marturano, Antonio
The Human Genome Project has been completed thanks to a massive use of computer techniques, as well as the adoption of the open-source business and research model by the scientists involved. This model won over the proprietary model and allowed a quick propagation and feedback of research results among peers. In this paper, the author will analyse some ethical and legal issues emerging by the use of such computer model in the Human Genome property rights. The author will argue that the Open Source is the best business model, as it is able to balance business and human rights perspectives.
Human reproduction: possibilities and ethical borders.
Directory of Open Access Journals (Sweden)
Pr RenĂŠ Frydman
Full Text Available Reproductive medicine is a new important field in all the countries. The possibilities are tremendous, therefore we have to decide if limits are necessary or should we consider that everything that have been initiated (as clone, gene transfer... can be apply in humans. That will be the challenge of a global ethical approach in each country with their culture, morality, guidelines or laws.
Reflexive Research Ethics for Environmental Health and Justice: Academics and Movement-Building.
Cordner, Alissa; Ciplet, David; Brown, Phil; Morello-Frosch, Rachel
Community-engaged research on environmental problems has reshaped researcher-participant relationships, academic-community interaction, and the role of community partners in human subjects protection and ethical oversight. We draw on our own and others' research collaborations with environmental health and justice social movement organizations to discuss the ethical concerns that emerge in community-engaged research. In this paper we introduce the concept of reflexive research ethics: ethical guidelines and decision-making principles that depend on continual reflexivity concerning the relationships between researchers and participants. Seeing ethics in this way can help scientists conduct research that simultaneously achieves a high level of professional conduct and protects the rights, well-being, and autonomy of both researchers and the multiple publics affected by research. We highlight our research with community-based organizations in Massachusetts, California, and Alaska, and discuss the potential impacts of the community or social movement on the research process and the potential impacts of research on community or social movement goals. We conclude by discussing ways in which the ethical concerns that surface in community-engaged research have led to advances in ethical research practices. This type of work raises ethical questions whose answers are broadly relevant for social movement, environmental, and public health scholars.
Ethical Principles: Guiding the Use of Animals in Research.
Morrison, Adrian R.
Presents arguments on the use of animals in biological and medical research. Discusses ethical considerations, principles, and animal rights in scientific research. (Contains 21 references.) (Author/YDS)
Co-ordinating 'ethical' clinical trials: the role of research coordinators in the contract research industry.
Fisher, Jill A
Change in the way new drugs are developed, including the privatisation of clinical trials, has altered the arrangement and roles of healthcare professions. In this paper I examine one aspect of this change: the role of research coordinators in the conduct of contract research in the United States. My focus on coordinators highlights the ethical conflicts embedded in clinical trials. I describe the ways in which coordinators experience and contend with the conflict between research and care and show how their construction of ethics is distinct from institutional conceptions formally associated with human subjects research. My analysis demonstrates how the coordinators' focus on ethics is a response to their role conflict and an attempt to reinsert individualised care into the context of research.
"Just Chatting": Research Ethics and Cyberspace
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Ellen Whiteman
Full Text Available Research conducted through computer-mediated communication is challenging traditional definitions of what is ethical research. In this article the author examines the changing role of assent/consent, confidentiality, and participant observation in qualitative research conducted in cyberspace. She concludes that REBs (research ethic boards might be becoming more conservative in their decisions at the very moment that Internet research requires more flexibility and broader ethical definitions.
Ethical considerations in longitudinal studies of human infants.
Thurman, Sabrina L
Ethical issues and their optimal solutions in longitudinal infant studies have not received adequate attention in the literature. To address this gap, this manuscript pulls from universal research ethics, ethical guidelines for infant and child research, and ethical guidelines for longitudinal research and combines them in the context of infant longitudinal research with typically-developing infants. Topics explored relate to participant consent to research studies, the participant-observer relationship, and closure of developmental studies in this targeted population. Additionally, this manuscript highlights the importance and need for new and more relevant considerations of ethical procedures that concern infants involved in longitudinal research. Copyright © 2015 Elsevier Inc. All rights reserved.
[The Development of Research Ethics Involving Indigenous People in Taiwan: A Brief Introduction].
Tansikian, Tunkan; Huang, Yu-Chao
Adhering to ethics protocols has become increasingly important in the process of doing research in Taiwan since the introduction of research-ethics mechanisms. Adhering to these protocols affects research on Taiwan's indigenous peoples due to the vulnerability of indigenous groups and to their increasing rights consciousness. The present paper explains the context of group rights from a national self-determination perspective and then discusses the current indigenous research-ethics mechanisms in Taiwan. The ethical guidelines for indigenous research in Canada, TCPS2 2014-Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans are referenced as a model for protocols that may foster positive and mutually trusting relationships between academic researchers and indigenous communities in Taiwan.
Ethical considerations in international nursing research: a report from the International Centre for Nursing Ethics.
Ethical issues in international nursing research are identified and the perspectives o International Centre for Nursing Ethics are offered in an effort to develop an international consensus of ethical behaviour in research. First, theoretical issues are reviewed, then initial conditions for ethical conduct are defined, and protocol design and procedure considerations are examined. A concerted effort is made to identify and avoid a western bias. Broad guiding principles for designing and reviewing research are offered: (1) respect for persons; (2) beneficence; (3) justice; (4) respect for community; and (5) contextual caring. A collaborative model of the researcher-participant relationship is suggested and discussed.
Ethical considerations in biomedical research: a personal view.
Dahlöf, Carl
Ethical considerations are made when an experiment is planned and take a regulatory system of moral principles into account. Ethical considerations should first and foremost be made in order to protect the individual subject/animal from being exposed to any unethical and perhaps even illegal intervention and to ensure that the experimental conditions used are appropriate. The main role of research ethics committees is to assess the scientific and ethical aspects of submitted protocols and follow up the trial until its closure.
A review of Indian psychiatry research and ethics
Agarwal, A. K.
Ethics does not seem to be a favorite topic of Indian authors. Electronic search of the IJP web site could only identify six articles which were directly related to ethics. One article discussed the relationship of ethics religion and psychiatry. Another editorial discussed the concept of responsibility in psychiatrists. Other editorial discussed the truth about 'truth serum' in legal investigations. One article discussed the ethical aspects of published research. There were two articles that...
Aspectos Éticos de la Investigación Clínica en seres humanos Clinic research in human beings: Ethical aspect
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Carlos M Albornoz López del Castillo
Full Text Available La ética de la experimentación con seres humanos no es sólo una de las áreas fundamentales de la bioética, sino también una de las problemáticas que le dieron origen. Se describen en este trabajo algunas implicaciones éticas de la experimentación en seres humanos; se analizan el origen y evolución de la bioética, los aspectos regulatorios para la realización de ensayos clínicos y su valoración moral, los tipos de experimentación; la realidad mundial y cubana en cuanto a investigación clínica y tecnología y el consentimiento informado. Se concluye que el criterio ético fundamental de las investigaciones en seres humanos es su disposición al servicio del hombreThe ethics of experimentation with human beings is not only one of the fundamental areas of bioethics, but also one of the problems that originated this field. In this work some ethical implications of experimentation in human beings are described; the origin and evolution of bioethics are analyzed, the regulatory aspects for the realization of clinical trials and their moral valuation, the experimentation types; international and Cuban reality as for clinical investigation and technology and the informed consent. It is assumed that the fundamental ethical approach of the investigations with human beings is its disposition to serve mankind
[Institutional ethics committees in Mexico: the ambiguous boundary between health care ethics and research ethics].
Valdez-Martínez, Edith; Lifshitz-Guinzberg, Alberto; Medesigo-Micete, José; Bedolla, Miguel
To identify ethics committees in medical practice in Mexico and possible implications stemming from their composition and functions. A cross-sectional descriptive study was conducted from January-December 2005. A survey was sent by e-mail to the hospitals and family medicine centers with at 10 practices within the Mexican Institute for Social Security (Instituto Mexicano del Seguro Social) (n=437) and the Institute for Security and Social Services for State Employees (Seguridad y Servicios Sociales de los Trabajadores del Estado) (n=167) and to the Mexican Ministry of Health's most important health care centers (n=15). The following items were analyzed: name of the committee, date of formation, current status, composition, functions, and level of authority. In all, 116 committees were identified, with various names. Of these, 101 (87.1%) were active. The committees were formed from 1985-2006, with a spike occurring in 2004-2005. Of the active committees, 59 (58.4%) were charged with ethical problems/dilemmas related to clinical practice as well as those related to research projects. Of the committee members, 357 (59.0%) held managing positions in the establishment to which the committee pertained; most were medical professionals (71.5%), followed by nursing staff (11.9%). Among the members of the active committees, 77.9% had not received training in ethics. Legal conflicts can be expected, mainly within the organizations whose committees have the authority to determine a course of action. An integrated plan is needed that will set standards for the composition and proceedings of Mexico's ethics committees and the improved training of committee members.
Community Partnered Research Ethics Training in Practice: A Collaborative Approach to Certification.
Yonas, Michael A; Jaime, Maria Catrina; Barone, Jean; Valenti, Shannon; Documét, Patricia; Ryan, Christopher M; Miller, Elizabeth
This report describes the development and implementation of a tailored research ethics training for academic investigators and community research partners (CRP). The Community Partnered Research Ethics Training (CPRET) and Certification is a free and publicly available model and resource created by a university and community partnership to ensure that traditional and non-traditional research partners may study, define, and apply principles of human subjects' research. To date, seven academic and 34 CRP teams have used this highly interactive, engaging, educational, and relationship building process to learn human subjects' research and be certified by the University of Pittsburgh Institutional Review Board (IRB). This accessible, flexible, and engaging research ethics training process serves as a vehicle to strengthen community and academic partnerships to conduct ethical and culturally sensitive research. © The Author(s) 2016.
Global Ethics Applied: Global Ethics, Economic Ethics
Stückelberger, Christoph
Global Ethics Applied' in four volumes is a reader of 88 selected articles from the author on 13 domains: Vol. 1 Global Ethics, Economic Ethics; Vol. 2 Environmental Ethics; Vol. 3 Development Ethics, Political Ethics, Dialogue and Peace Ethics, Innovation and Research Ethics, Information and Communication Ethics; Vol. 4 Bioethics and Medical Ethics, Family Ethics and Sexual Ethics, Leadership Ethics, Theological Ethics and Ecclesiology, Methods of Ethics. It concludes with the extended Bibli...
Ethics, Science and Value Judgments: A Critique of Ethical Issues within the Methodology of Social Research.
Shaw, Jimmy Lee
Ways in which the ethics of value judgment are inherent in sociological research are examined. Also, the course of action that a researcher should consider when doing or talking ethics in relation to the society in which he or she expects to undertake research is discussed. (Author/RM)
Exploring perceptions and experiences of Bolivian health researchers with research ethics.
Sullivan, Sarah; Aalborg, Annette; Basagoitia, Armando; Cortes, Jacqueline; Lanza, Oscar; Schwind, Jessica S
In Bolivia, there is increasing interest in incorporating research ethics into study procedures, but there have been inconsistent application of research ethics practices. Minimal data exist regarding the experiences of researchers concerning the ethical conduct of research. A cross-sectional study was administered to Bolivian health leaders with research experience (n = 82) to document their knowledge, perceptions, and experiences of research ethics committees and infrastructure support for research ethics. Results showed that 16% of respondents reported not using ethical guidelines to conduct their research and 66% indicated their institutions did not consistently require ethics approval for research. Barriers and facilitators to incorporate research ethics into practice were outlined. These findings will help inform a comprehensive rights-based research ethics education program in Bolivia. © The Author(s) 2015.
Beneficence as a principle in human research.
Pieper, Ian; Thomson, Colin J H
Beneficence is one of the four principles that form the basis of the Australian National Statement. The aim of this paper is to explore the philosophical development of this principle and to clarify the role that beneficence plays in contemporary discussions about human research ethics. By examining the way that guidance documents, particularly the National Statement, treats beneficence we offer guidance to researchers and human research ethics committee members on the practical application of what can be a conceptually difficult principle.
Paying Clinical Research Participants: One Institution's Research Ethics Committees' Perspective.
Ripley, Elizabeth B D; Macrina, Frank L; Markowitz, Monika
REGULATORY GUIDELINES LEAVE determination of coercion and undue influence of research participants open to interpretation. A web-based survey was conducted of the research ethics committees members at Virginia Commonwealth University (VCU) to evaluate their perspectives on paying participants in clinical research via general questions, as well as 8 short cases involving hypertension placebo-controlled trials, a pilot exercise study, a survey of substance abusers, a healthy-volunteer pharmacokinetic study, a twin study involving DNA samples, and an asthma medication study in children. Research ethics committee members were asked to state what payment they would consider appropriate for a given type of protocol. The results suggest that risk, time required, reimbursement for expenses, and inconvenience were important in determining appropriate payment, while income and funding source were not. The case studies revealed wide variation in recommended payments both within type of study and between studies.
Are students kidding with health research ethics? The case of HIV/AIDS research in Cameroon
Background Universities in Cameroon are playing an active part in HIV/AIDS research and much of this research is carried out by students, usually for the purpose of a dissertation/thesis. Student theses/dissertations present research findings in a much more comprehensive manner and have been described as the stepping-stone of a budding scientist's potential in becoming an independent researcher. It is therefore important to verify how students handle issues of research ethics. Method Theses/dissertations on HIV/AIDS that described research studies involving the use of human research participants were screened to verify if research ethics approval and informed consent were obtained and documented. The contents of the consent forms were also qualitatively analyzed. Results Of 174 theses/dissertations on HIV, ethics approval was documented in 17 (9.77%) and informed consent in 77 (47.83%). Research ethics approval was first mentioned at all in 2002 and highly reported in the year 2007. Evidence of ethics approval was found for the first time in 2005 and informed consent first observed and evidenced in 1997. Ethics approval was mostly reported by students studying for an MD (14.01%) and was not reported in any Bachelors' degree dissertation. Informed consent was also highly reported in MD theses (64.58%) followed by undergraduate theses (31.58%). Voluntary participation and potential benefits of the study were some of the common aspects dealt with in most of the consent forms. The right to discontinue participation in the study and management of residual samples were scarcely ever mentioned. Conclusions Overall, and given the current state of the art of research ethics around the world, student-scientists in Cameroon would seem to be merely kidding with research ethics. It is thus essential that training in health research ethics (HRE) be incorporated in the curriculum of universities in Cameroon in order that the next generation of scientists may be better
Are students kidding with health research ethics? The case of HIV/AIDS research in Cameroon.
Munung, Nchangwi Syntia; Tangwa, Godfrey B; Che, Chi Primus; Vidal, Laurent; Ouwe-Missi-Oukem-Boyer, Odile
Universities in Cameroon are playing an active part in HIV/AIDS research and much of this research is carried out by students, usually for the purpose of a dissertation/thesis. Student theses/dissertations present research findings in a much more comprehensive manner and have been described as the stepping-stone of a budding scientist's potential in becoming an independent researcher. It is therefore important to verify how students handle issues of research ethics. Theses/dissertations on HIV/AIDS that described research studies involving the use of human research participants were screened to verify if research ethics approval and informed consent were obtained and documented. The contents of the consent forms were also qualitatively analyzed. Of 174 theses/dissertations on HIV, ethics approval was documented in 17 (9.77%) and informed consent in 77 (47.83%). Research ethics approval was first mentioned at all in 2002 and highly reported in the year 2007. Evidence of ethics approval was found for the first time in 2005 and informed consent first observed and evidenced in 1997. Ethics approval was mostly reported by students studying for an MD (14.01%) and was not reported in any Bachelors' degree dissertation. Informed consent was also highly reported in MD theses (64.58%) followed by undergraduate theses (31.58%). Voluntary participation and potential benefits of the study were some of the common aspects dealt with in most of the consent forms. The right to discontinue participation in the study and management of residual samples were scarcely ever mentioned. Overall, and given the current state of the art of research ethics around the world, student-scientists in Cameroon would seem to be merely kidding with research ethics. It is thus essential that training in health research ethics (HRE) be incorporated in the curriculum of universities in Cameroon in order that the next generation of scientists may be better equipped with thorough knowledge and practice of
Are students kidding with health research ethics? The case of HIV/AIDS research in Cameroon
Directory of Open Access Journals (Sweden)
Munung Nchangwi
Full Text Available Abstract Background Universities in Cameroon are playing an active part in HIV/AIDS research and much of this research is carried out by students, usually for the purpose of a dissertation/thesis. Student theses/dissertations present research findings in a much more comprehensive manner and have been described as the stepping-stone of a budding scientist's potential in becoming an independent researcher. It is therefore important to verify how students handle issues of research ethics. Method Theses/dissertations on HIV/AIDS that described research studies involving the use of human research participants were screened to verify if research ethics approval and informed consent were obtained and documented. The contents of the consent forms were also qualitatively analyzed. Results Of 174 theses/dissertations on HIV, ethics approval was documented in 17 (9.77% and informed consent in 77 (47.83%. Research ethics approval was first mentioned at all in 2002 and highly reported in the year 2007. Evidence of ethics approval was found for the first time in 2005 and informed consent first observed and evidenced in 1997. Ethics approval was mostly reported by students studying for an MD (14.01% and was not reported in any Bachelors' degree dissertation. Informed consent was also highly reported in MD theses (64.58% followed by undergraduate theses (31.58%. Voluntary participation and potential benefits of the study were some of the common aspects dealt with in most of the consent forms. The right to discontinue participation in the study and management of residual samples were scarcely ever mentioned. Conclusions Overall, and given the current state of the art of research ethics around the world, student-scientists in Cameroon would seem to be merely kidding with research ethics. It is thus essential that training in health research ethics (HRE be incorporated in the curriculum of universities in Cameroon in order that the next generation of
Ética e direitos humanos na e pela pesquisa e extensão universitárias Human ethics and rights in the university research and extension
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Fernanda Spanier Amador
Full Text Available Neste artigo discuto a ética e os direitos humanos na e pela pesquisa e extensão universitárias, transversalizando os conceitos de tempo e de subjetividade, sobretudo a partir das contribuições de Deleuze, Guattari e Foucault. Abordando a ética, os direitos humanos, a produção de conhecimento e a vida em sua instigante indiscernibilidade, convido a refletir sobre a assunção de uma postura, enquanto pesquisadores e extensionistas, em devir, ou seja, cedendo lugar à experimentação e acionando a diferença. Discuto sobre o tema no plano das epistemologias propondo a promoção da ética e dos direitos humanos na esfera mesma da produção de conhecimento.In this article ethics and the human rights are discussed in and through university research, crossing the concepts of time and subjectivity, following the theoretical references of Deleuze, Guattari and Foucault. Approaching ethics, human rights, "knowledge production" and life as intertwined notions, it proposes the possibility of the attitude of "researchers to be", which involves the possibility of working with experimentation and "difference". The discussion is carried out in the plan of epistemologies and proposes the promotion of ethics and human rights in the same sphere of "knowledge production".
Research in Humans: Current Perspectives in Brazil
Célia Alcantara Cunha Lima
This work addressed the norms of ethics for human experimentation in Brazil, operationalized by the National Research Ethics Commission (CONEP) of the National Health Council (CNS). It analyzed international principles of bioethics as a theoretical framework for the Brazilian regulation. National and international publications were reviewed, by Capes periodicals, relating to historical ethical infractions, such as reflection to the current day. It analyzed the law (PL) 200/2015 of the Senate,...
Ethical Issues in Addressing Inequity in/through ESL Research
Lee, Ena
This article outlines a researcher's struggles with conducting "ethical" research when her case study reveals racializations faced by a minority teacher in a Canadian ESL program. How might becoming privy to research participants' experiences of inequity in ESL education complicate the notion of research ethics when "doing the right…
Ethical Issues in the Research of Group Work
Goodrich, Kristopher M.; Luke, Melissa
This article provides a primer for researchers exploring ethical issues in the research of group work. The article begins with an exploration of relevant ethical issues through the research process and current standards guiding its practice. Next, the authors identify resources that group work researchers can consult prior to constructing their…
The research ethics evolution: from Nuremberg to Helsinki.
Dhai, A
Health research sets out to acquire not only theoretical knowledge but also benefits for many people and often society as a whole, and is therefore justified. The quandary, though, is how such an important, shared purpose can be pursued with full protection of individuals and communities, in particular those with vulnerabilities. Abuses in the field surfaced in the early 1800s, and by the 1890s, anti-vivisectionists were calling for laws to protect children because of the increasing numbers of institutionalised children being subjected to unethical research. When read together, the Nuremberg Code and the Universal Declaration of Human Rights can be interpreted as establishing a basis for underpinning the principles of free and informed consent and avoiding harms and exploitation in scientific experiments involving human participants. The Declaration of Helsinki has been recognised as one of the most authoritative statements on ethical standards for human research in the world.
Famenka, Andrei
The paper provides description of the system of ethical review for biomedical research in Belarus, with special emphasis on its historical background, legal and regulatory framework, structure and functioning. It concludes that the situation with research ethics in Belarus corresponds to the tendency of bureaucratic approach to establishment of systems of ethical review for biomedical research, observed in a number of countries of Central and Eastern Europe. Different social, economical and political factors of transition have major impact on capacities of the Belarusian RECs to ensure adequate protection of human subjects. Among the main problems identified are non-equivalent stringency of ethical review for different types of biomedical research; lack of independence, multidisciplinarity, pluralism and lay representation experienced by RECs; low level of research ethics education and transparency of RECs activities. Recommendations are made to raise the issue of research ethics on the national agenda in order to develop and maintain the research ethics system capable to effectively protect research participants and promote ethical conduct in research.
The everyday ethics of field work research with vulnerable patients.
Lichtner, Valentina
Patients are increasingly involved in health informatics research. Researchers are always aware of the ethical dimensions of their research, but studies in the field with patients--especially among the frail, elderly, cognitively impaired--present specific additional 'everyday moral dilemmas'. Reflecting on experiences of a hospital study of patients with dementia, this paper draws attention on the type and constant presence of this situated ethics, the immediacy of decision-making, and the importance of everyday ethics for health informatics.
Human Good in the Nicomachean Ethics I
Hudoletnjak Grgić, Maja
In the Nicomachean Ethics, the theory of human happiness is set forth in two separate accounts, in Book I and in Book X. In Book X, Aristotle distinguishes two kinds of happiness, while the discussion in Book I strongly suggests that only one definition of happiness should be accepted. Yet, it appears that in Book X Aristotle identifies happiness with one activity, while in Book I it is assumed that it includes more than one activity. I try to show what is the conception of happiness offered ...
Ethical issues in qualitative health research with homeless youths.
Ensign, Josephine
There is a need for increased guidance for the ethical conduct of qualitative research with vulnerable populations such as homeless youths. The purpose of this paper is to provide an overview of the main ethical challenges of conducting qualitative research with homeless youths and to propose possible solutions to these challenges. This paper was informed by a review of professional guidelines for the ethical conduct of adolescent health research, national (US) and international bioethics bibliographical searches, and personal experience with qualitative research with homeless youths. The main ethical challenges of conducting qualitative research with homeless youths include establishing and maintaining healthy researcher roles and boundaries, addressing the risks of researcher burn-out and safety issues, assuring optimal confidentiality, and avoiding sensationalism and voyeurism. It is important for qualitative researchers who work with vulnerable populations to ensure that research is conducted in the most ethical way possible.
[Social representations about humanization of care: ethical and moral implications].
Araújo, Flávia Pacheco; de Ferreira, Márcia de Assunção
This research aimed at identifying the ethical aspects in the social representations of clients on the humanization and to argue the implications of these for the nursing care. A qualitative study was carried out whose data collection was by means of semi-structured interview and participant observation with 24 patients hospitalized in a public institution. The social representations about humanization of care gain contours of the ethics and the moral, in the establishment of gradients of merit of the good treatment, and resolute actions, clinical evaluation and respect to the right of the client. The right to the good treatment is not equal for all, what indicates the possible differentiations in social representations about citizenship.
Research ethics in global mental health: advancing culturally responsive mental health research.
Ruiz-Casares, Mónica
Global mental health research is needed to inform effective and efficient services and policy interventions within and between countries. Ethical reflection should accompany all GMHR and human resource capacity endeavors to ensure high standards of respect for participants and communities and to raise public debate leading to changes in policies and regulations. The views and circumstances of ethno-cultural and disadvantaged communities in the Majority and Minority world need to be considered to enhance scientific merit, public awareness, and social justice. The same applies to people with vulnerabilities yet who are simultaneously capable, such as children and youth. The ethical principles of respect for persons or autonomy, beneficence/non-maleficence, justice, and relationality require careful contextualization for research involving human beings. Building on the work of Fisher and colleagues (2002), this article highlights some strategies to stimulate the ethical conduct of global mental health research and to guide decision-making for culturally responsible research, such as developing culturally sensitive informed consent and disclosure policies and procedures; paying special attention to socioeconomic, cultural, and environmental risks and benefits; and ensuring meaningful community and individual participation. Research and capacity-building partnerships, political will, and access to resources are needed to stimulate global mental health research and consolidate ethical practice. © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.
Perception, understanding and practice of ethics during research on ...
African Journals Online (AJOL)
... fields of social sciences, clinical and basic sciences. Research experience ranged from one to thirty four years. 27% had had formal training in research ethics; the remaining 73% had a vague idea about research ethics. All respondents appreciated the importance of confidentiality although data management procedures ...
Ethical Research in the Information Age: Beginning the Dialog.
Schrum, Lynne
Qualitative researchers who study electronic communities or describe online communications must change their research tools and adapt their activities to new environments to continue ethical practices. Possibilities of online research within the context of ethical qualitative practice are explored, and suggestions are offered for appropriate ways…
Doing better than the media: ethical issues in trauma research
National Research Council Canada - National Science Library
Raftery, J
.... Our search for understanding through research also requires us to explore the experience of the event and its consequences. But what are the ethical issues of getting involved? Do we have any clear guidelines to follow in research and clinical practice? This paper addresses briefly the ethical issues in researching the effects of traumatic events. ( author abstract)
Solving Ethical Dilemmas with Children: Empowering Classroom Research
Parr, Michelann
This article identifies and discusses ethical dilemmas inherent when undertaking research with children or other vulnerable populations: power relations, risks and benefits, and informed consent and confidentiality (Maguire, 2005). Ethical dilemmas often arise when researchers attempt to merge the interests of their research and the interests of…
A critical review of health research ethical guidelines regarding ...
African Journals Online (AJOL)
Available ethical guidelines for caregivers' consent in research involving minors are still not comprehensive or aligned with SA regulations governing research with minors. The recent revision and development of the National Health Research Ethics Guidelines (2015), regarding the role of caregivers in consent practice for ...
Do Brazilian scientific journals promote the adherence of Chagas disease researchers to international ethical principles?
Malafaia, Guilherme; Guilhem, Dirce; Talvani, André
The ethical aspects of the Brazilian publications about human Chagas disease (CD) developed between 1996 and 2010 and the policy adopted by Brazilian medical journals were analyzed. Articles were selected on the SciELO Brazil data basis, and the evaluation of ethical aspects was based on the normative contents about ethics in research involving human experimentation according to the Brazilian resolution of the National Health Council no. 196/1996. The editorial policies of the section "Instructions to authors" were analyzed. In the period of 1996-2012, 58.9% of articles involving human Chagas disease did not refer to the fulfillment of the ethical aspects concerning research with human beings. In 80% of the journals, the requirements and confirmation of the information about ethical aspects in the studies of human CD were not observed. Although a failure in this type of service is still observed, awareness has been raised in federal agencies, educational institutions/research and publishing groups to standardize the procedures and ethical requirements for the Brazilian journals, reinforcing the fulfillment of the ethical parameters, according to the resolution of NHC no. 196/1996.
Do Brazilian scientific journals promote the adherence of Chagas disease researchers to internacional ethical principals?
Directory of Open Access Journals (Sweden)
Guilherme Malafaia
Full Text Available The ethical aspects of the Brazilian publications about human Chagas disease (CD developed between 1996 and 2010 and the policy adopted by Brazilian medical journals were analyzed. Articles were selected on the SciELO Brazil data basis, and the evaluation of ethical aspects was based on the normative contents about ethics in research involving human experimentation according to the Brazilian resolution of the National Health Council no. 196/1996. The editorial policies of the section "Instructions to authors" were analyzed. In the period of 1996-2012, 58.9% of articles involving human Chagas disease did not refer to the fulfillment of the ethical aspects concerning research with human beings. In 80% of the journals, the requirements and confirmation of the information about ethical aspects in the studies of human CD were not observed. Although a failure in this type of service is still observed, awareness has been raised in federal agencies, educational institutions/research and publishing groups to standardize the procedures and ethical requirements for the Brazilian journals, reinforcing the fulfillment of the ethical parameters, according to the resolution of NHC no. 196/1996.
Information ethics and Internet research ethics: An interview with Rafael Capurro
Rahman Marefat; Mahmood Sangari
The emergence of the Internet and new technologies along with their challenges, have caused more attention to new and special aspects of ethics. This is an interview with Rafael Capurro on information ethics and Internet research ethics. This interview is given on the occasion of an invitation from Prof. Jafar Mehrad to visit the Islamic World Science Citation Center (ISC) and the Regional Information Center for Science and Technology (RICEST) in Shiraz (Iran) from September 30 to October 5, ...
Research on the professional ethics issues of CPA in China
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Zhang Xuejun
Full Text Available Since the 1990s, auditing collusion cases have occured frequently, reducing the integrity degree of CPA. Of all reasons, we should pay attention to professional ethics issues most. Because of professional ethics issues, the public have lost confidence in the industry of CPA. The industry of CPA is faced with serious crisis. In the circumstance, this paper researched professional ethics issues of CPA. Firstly, it explained the connotation of professional ethics, emphasized the importance. Secondly, through real cases, this paper analyzed the present situation of professional ethics of CPA, explained the lack of professional ethics. Finally, for solving the problem, this paper proposed the countermeasures to enhance the standards of professional ethics of CPA from the external and internal practice environment.
Ethical assessment of research protocols: the experience of the Research Ethics Committee of the Hospital Israelita Albert Einstein (HIAE
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Sonia Maria Oliveira de Barros
Full Text Available This is a review article on the origin of the ethical analysis ofresearch protocols, the Brazilian and International legislation,including the Research Ethics Committee of Hospital IsraelitaAlbert Einstein. Since 1997, when the Committee was validatedits role has been recognized as that of a consultant and educator,participating on local and national scientific events andcollaborating with researchers in order to improve their projectsand learn to recognize ethical dilemmas in their protocols.
Neuroimaging Research with Children: Ethical Issues and Case Scenarios
Coch, Donna
There are few available resources for learning and teaching about ethical issues in neuroimaging research with children, who constitute a special and vulnerable population. Here, a brief review of ethical issues in developmental research, situated within the emerging field of neuroethics, highlights the increasingly interdisciplinary nature of…
The Ethics of Digital Writing Research: A Rhetorical Approach
McKee, Heidi; Porter, James E.
The study of writers and writing in digital environments raises distinct and complex ethical issues for researchers. Rhetoric theory and casuistic ethics, working in tandem, provide a theoretical framework for addressing such issues. A casuistic heuristic grounded in rhetorical principles can help digital writing researchers critically…
Ethical Perspectives on Qualitative Research in Applied Psychology
Haverkamp, Beth E.
The present article explores ethical issues that emerge in qualitative research conducted by applied psychologists. The utility and relevance of the Ethical Principles of Psychologists and Code of Conduct (American Psychological Association, 2002) for qualitative research are examined. The importance of psychology's fiduciary relationship with…
Exploring Institutional Research Ethics Systems: A Case Study From Uganda.
Hyder, Adnan A; Ali, Joseph; Hallez, Kristina; White, Tara; Sewankambo, Nelson K; Kass, Nancy E
The increasing globalization of research drives a need for greater research ethics capacity in low resource countries. Several programs have attempted to expand research ethics capacity by training individuals, but few have focused on broader research ethics systems and institutions. This study describes and applies an institutional research ethics model to assess the institutional research ethics capacity of Makerere University College of Heath Sciences (MakCHS) in 2011. Internal and external stakeholders conducted the assessment of MakCHS using the multidimensional Octagon framework. Five methods were used to collect data on current ethical processes and institutional relationships. MakCHS scored in the mid range on all Octagon domains, with some variation between external and internal assessments. The external Octagon scores suggest that MakCHS's areas of strengths are in identity, structure, relevance, target groups, and working environment; needs are greater in the areas of production, competence, and systems of finance and administration. Discrepancies in external and internal assessment can serve as a useful platform to shape ongoing discussions and strategic efforts. The assessment identified strengths, opportunities, and challenges for institutional research ethics capacity at MakCHS. We believe this systematic approach was helpful in evaluating research ethics needs and provides a benchmark for institutions to measure progress over time.
Ethics in Customer Service: Critical Review and Research Agenda.
Ford, Wendy S. Zabava
Identifies domains of unethical service communication and proposes a research agenda for examining service ethics. Calls for research to explore service ethics among different occupational groups, investigate effects of unethical practices on service providers and customers, and identify characteristics of organizational climates which foster…
Reconsidering 'ethics' and 'quality' in healthcare research: the case for an iterative ethical paradigm.
Stevenson, Fiona A; Gibson, William; Pelletier, Caroline; Chrysikou, Vasiliki; Park, Sophie
UK-based research conducted within a healthcare setting generally requires approval from the National Research Ethics Service. Research ethics committees are required to assess a vast range of proposals, differing in both their topic and methodology. We argue the methodological benchmarks with which research ethics committees are generally familiar and which form the basis of assessments of quality do not fit with the aims and objectives of many forms of qualitative inquiry and their more iterative goals of describing social processes/mechanisms and making visible the complexities of social practices. We review current debates in the literature related to ethical review and social research, and illustrate the importance of re-visiting the notion of ethics in healthcare research. We present an analysis of two contrasting paradigms of ethics. We argue that the first of these is characteristic of the ways that NHS ethics boards currently tend to operate, and the second is an alternative paradigm, that we have labelled the 'iterative' paradigm, which draws explicitly on methodological issues in qualitative research to produce an alternative vision of ethics. We suggest that there is an urgent need to re-think the ways that ethical issues are conceptualised in NHS ethical procedures. In particular, we argue that embedded in the current paradigm is a restricted notion of 'quality', which frames how ethics are developed and worked through. Specific, pre-defined outcome measures are generally seen as the traditional marker of quality, which means that research questions that focus on processes rather than on 'outcomes' may be regarded as problematic. We show that the alternative 'iterative' paradigm offers a useful starting point for moving beyond these limited views. We conclude that a 'one size fits all' standardisation of ethical procedures and approach to ethical review acts against the production of knowledge about healthcare and dramatically restricts what can be
Ethics of international clinical research collaboration - the experience of AlloStem.
Chaplin, C
This paper examines the ethics of international clinical collaboration in stem cell research by focusing on the AlloStem project. AlloStem is an international research programme, financed by the European Union under the Sixth Framework Programme, with the aim of advancing the use of stem cells in treating leukaemia and other haematological diseases. Several areas of ethical importance are explored. Research justification and the need to consider both deontological and teleological aspects are examined. Ethical sensitivity in research and the requirement to respond to areas of ethical concern identified by the European Commission, such as the involvement of human beings, the use of human tissue, and the use of animals are also explored. Ethical issues around project structure and management, such as ethical standardization in international research, and achieving set targets are discussed. The ethical importance of dissemination of findings and teaching in clinical research is also considered. Finally, the distribution of benefits is addressed and the importance of distributive justice is emphasized.
Trends in nursing ethics research: Mapping the literature production.
Blažun Vošner, Helena; Železnik, Danica; Kokol, Peter; Vošner, Janez; Završnik, Jernej
There have been a number of debates in the field of nursing ethics. Researchers have focused on various aspects of nursing ethics, such as professional ethics, professional, nursing and ethical values. Within this research, a variety of literature reviews have been conducted, but to the best of our knowledge, bibliometric mapping has not yet been used. This article aims to analyse the production of literature within nursing ethics research. In order to examine publishing patterns, we focused on publishing dynamics, prolific research entities and the most-cited articles. We additionally visualised the content of the literature using a novel mixed-method approach, combining bibliometric analysis and mapping with thematic analysis. Ethical considerations: In our study, ethical review was not required. A total of 1416 information sources were found in the Scopus database. Overall, literature production has increased; however, in recent years, the quantity of published material has begun to decrease. The most prolific countries are the United States, the United Kingdom and Canada, and the most prolific source titles are Nursing Ethics, Journal of Advanced Nursing and Nursing Times. Lately, research in the field of nursing ethics has been focused more on life care (providing for the basic needs of older residents), moral distress and community nursing. The dynamics of research literature production showed an exponential rise in the number of published information sources - a rise which started in the period between 1974 and 1998. Since that period, the trend has stabilised, which might indicate that nursing ethics research is starting a transition to a mature phase. The innovative use of bibliometric analysis and mapping, together with thematic analysis, is a useful tool for analysis of research production in the field of nursing ethics. The results presented can be an excellent starting point for literature reviews and more exhaustive data, information and knowledge
Ethical Justification of Moral Norms in Scientific Research: Scientists' External Responsibilities
Directory of Open Access Journals (Sweden)
Mehmet AKÖZER
Full Text Available Scientists' moral responsibilities have become a focus for the scientific community over the postwar decades. International and regional networks of leading academic bodies have responded to a widely perceived increase in scientific fraud and the ensued loss of public trust in science during the 1980s, and initiated a discussion with a view to codifying good practice in research. While scientists' "external" responsibilities towards society and the humankind have been variously addressed, codes drafted since then mainly dwell on problems of misconduct concerning scientists' "internal" responsibilities towards science and to the scientific community. They also reflect an ethical pluralism, which declines justifying moral standards in research with reference to universal ethical principles. However, the need for such justification has been first recognized decades ago, during the Doctor's Trial in Nuremberg, where the shortcomings of the established ethos of science and the inadequacy of the Hippocratic ethics in safeguarding human rights in research had become flagrant, with the resultant Nuremberg Code of 1947 introducing a human rights perspective into Hippocratic ethics. This paper argues for the necessity of an integral ethical justification of scientists' both external and inner responsibilities, as put down or assumed by internationally acclaimed codes of conduct. Such necessity is validated by the evidence that a historical current to monopolize ethical thinking in the name of science and nullify philosophical ethics lies at the root of an anti–morality that relativized human worth and virtually legitimized human rights violations in scientific practice. Kantian ethics based on humans' absolute inner worth, and Popperian epistemology rooted in respect for truth and for humans as rational beings, pledge an ethical justification of moral norms in science so as to reinforce the latter against intrusions of anti–morality. The paper
ethics, religion and humanity: rethinking religion in 21 century africa.
African Journals Online (AJOL)
Thus, the intricate relationship among our three concepts: ethics, religion and humanity. In this paper therefore, we shall be grappling with such pertinent issues as, what is religion, what should constitute a right religion, should our religious practices be brought under ethical appraisal? Within the context of humanity, what is.
Patenting human pluripotent cells: balancing commercial, academic and ethical interests.
Bahadur, G; Morrison, M
The article addresses the issue of the ethics of patenting in human embryonic stem (hES) cells. The current stance of the European Patent Office in citing moral objections to patents on hES cells and the monopolistic scope of the Wisconsin Research Alumni Fund/Geron patents granted by the United States Patent and Trademark Office represent twin obstacles to achieving an ethical balance in patent rights in this field. The particular issues and strategies around granting patents on hES cells can be better understood by placing them in the context of the biotechnology industry and its role in the global bioeconomy. Some possible avenues of redress are considered based on the potential to open up cell pluripotency as new terrain for intellectual property offered by new technological breakthroughs such as induced pluripotent cells. Any changes in patent law should be accompanied by increased collaboration through devices such as patent pools.
Basing Science Ethics on Respect for Human Dignity.
Aközer, Mehmet; Aközer, Emel
A "no ethics" principle has long been prevalent in science and has demotivated deliberation on scientific ethics. This paper argues the following: (1) An understanding of a scientific "ethos" based on actual "value preferences" and "value repugnances" prevalent in the scientific community permits and demands critical accounts of the "no ethics" principle in science. (2) The roots of this principle may be traced to a repugnance of human dignity, which was instilled at a historical breaking point in the interrelation between science and ethics. This breaking point involved granting science the exclusive mandate to pass judgment on the life worth living. (3) By contrast, respect for human dignity, in its Kantian definition as "the absolute inner worth of being human," should be adopted as the basis to ground science ethics. (4) The pathway from this foundation to the articulation of an ethical duty specific to scientific practice, i.e., respect for objective truth, is charted by Karl Popper's discussion of the ethical principles that form the basis of science. This also permits an integrated account of the "external" and "internal" ethical problems in science. (5) Principles of the respect for human dignity and the respect for objective truth are also safeguards of epistemic integrity. Plain defiance of human dignity by genetic determinism has compromised integrity of claims to knowledge in behavioral genetics and other behavioral sciences. Disregard of the ethical principles that form the basis of science threatens epistemic integrity.
Ethical conduct of palliative care research: enhancing communication between investigators and institutional review boards.
Abernethy, Amy P; Capell, Warren H; Aziz, Noreen M; Ritchie, Christine; Prince-Paul, Maryjo; Bennett, Rachael E; Kutner, Jean S
Palliative care has faced moral and ethical challenges when conducting research involving human subjects. There are currently no resources to guide institutional review boards (IRBs) in applying standard ethical principles and terms-in a specific way-to palliative care research. Using as a case study a recently completed multisite palliative care clinical trial, this article provides guidance and recommendations for both IRBs and palliative care investigators to facilitate communication and attain the goal of conducting ethical palliative care research and protecting study participants while advancing the science. Beyond identifying current challenges faced by palliative care researchers and IRBs reviewing palliative care research, this article suggests steps that the palliative care research community can take to establish a scientifically sound, stable, productive, and well-functioning relationship between palliative care investigators and the ethical bodies that oversee their work. Copyright © 2014 American Academy of Hospice and Palliative Medicine. All rights reserved.
Ethical dilemmas and ethical competence in the daily work of research nurses.
Höglund, A T; Helgesson, G; Eriksson, S
In spite of the growing interest in nursing ethics, few studies have focused on ethical dilemmas experienced by nurses working with clinical studies as 'research nurses'. The aim of the present study was to describe and explore ethical dilemmas that Swedish research nurses experience in their day-to-day work. In a qualitative study a purposeful sample of six research nurses from five wards of differing disciplines in four Swedish hospitals was interviewed. The analysis displayed several examples of ethical dilemmas, primarily tensions between the nurses' obligations to the study and to the patients involved. A guiding moral principle for the nurses was patient-centeredness, where the interest of research must not override the interest of the patient. In situations where tensions between research and patient interests occurred, and doctors and nurses disagreed upon the judgement, the nurses sometimes chose to follow the doctors' advice, and thus acted against their own moral judgment. Such situations seemed to create feelings of moral distress among the nurses. They described their profession as being 'invisible' and as lacking opportunities for ethical competence building. The conclusion is that research nurses frequently experience severe and difficult ethical dilemmas in their daily work. They need to be acknowledged as a particular profession in the health care organisation and encouraged to develop their specific ethical competence.
Getting personal: ethics and identity in global health research.
Simon, Christian; Mosavel, Maghboeba
'Researcher identity' affects global health research in profound and complex ways. Anthropologists in particular have led the way in portraying the multiple, and sometimes tension-generating, identities that researchers ascribe to themselves, or have ascribed to them, in their places of research. However, the central importance of researcher identity in the ethical conduct of global health research has yet to be fully appreciated. The capacity of researchers to respond effectively to the ethical tensions surrounding their identities is hampered by lack of conceptual clarity, as to the nature and scope of the issues involved. This paper strives to provide some clarification of these ethical tensions by considering researcher identity from the perspective of (1) Guillemin and Heggen's (2009) key distinction between procedural ethics and ethics in practice, and (2) our own distinction between perceptions of identity that are either symmetrical or asymmetrical, with the potential to shift research relationships toward greater or lesser ethical harmony. Discussion of these concepts is supported with ethnographic examples from relevant literature and from our own (United States (US) Government-funded) research in South Africa. A preliminary set of recommendations is provided in an effort to equip researchers with a greater sense of organization and control over the ethics of researcher identity. The paper concludes that the complex construction of researcher identity needs to be central among the ethical concerns of global health researchers, and that the conceptual tools discussed in the paper are a useful starting point for better organizing and acting on these ethical concerns. © 2011 Blackwell Publishing Ltd.
Human rights, ethical principles, and standards in forensic psychology.
Ward, Tony; Gannon, Theresa; Vess, Jim
Human rights create a protective zone around persons and allow them the opportunity to further their valued personal projects without interference from others. This article considers the relationship between human rights and the general ethical principles and standards contained in the American Psychological Association's (APA's) code of ethics as applied to the forensic domain. First, it analyzes the concept of human rights, their structure, and their justification. Second, it briefly describes the APA's most recent code of ethics and the principles and standards that compose it. Third, it concludes by explicitly examining the relationship between the present human rights model and the APA's code, demonstrating how it is able to provide an additional ethical resource for forensic practitioners in their clinical work and so deepen their ethical sensibilities and decision making. Finally, the article presents a case study and discusses the human rights issues confronting practitioners inherent in such situations.
Considering the ethics of big data research: A case of Twitter and ISIS/ISIL.
Buchanan, Elizabeth
This is a formal commentary, responding to Matthew Curran Benigni, Kenneth Joseph, and Kathleen Carley's contribution, "Online extremism and the communities that sustain it: Detecting the ISIS supporting community on Twitter". This brief review reflects on the ethics of big data research methodologies, and how novel methods complicate long-standing principles of research ethics. Specifically, the concept of the "data subject" as a corollary, or replacement, of "human subject" is considered.
Students' Involvement in Faculty Research: Ethical and Methodological Issues
Directory of Open Access Journals (Sweden)
Linda M. Ferguson
Full Text Available Faculty who engage students as participants in their qualitative research often encounter methodological and ethical problems. Ethical issues arise from the fiduciary relationship between faculty and their students, and violations of that relationship occur when the educator has a dual role as researcher with those students. Methodological issues arise from research designs to address these ethical issues. This conflict is particularly evident in faculty research on pedagogy in their own disciplines, for which students are necessary as participants but are captive in the relationship. In this article, the authors explore the issues of double agency when faculty involve students as participants in their research.
Beyond procedural ethics: foregrounding questions of justice in global health research ethics training for students.
Hunt, Matthew R; Godard, Beatrice
Interest in global health is growing among students across many disciplines and fields of study. In response, an increasing number of academic programmes integrate and promote opportunities for international research, service or clinical placements. These activities raise a range of ethical issues and are associated with important training needs for those who participate. In this paper, we focus on research fieldwork conducted in lower income nations by students from more affluent countries and the ethics preparation they would benefit from receiving prior to embarking on these projects. Global health research is closely associated with questions of justice and equity that extend beyond concerns of procedural ethics. Research takes place in and is shaped by matrices of political, social and cultural contexts and concerns. These realities warrant analysis and discussion during research ethics training. Training activities present an opportunity to encourage students to link global health research to questions of global justice, account for issues of justice in planning their own research, and prepare for 'ethics-in-practice' issues when conducting research in contexts of widespread inequality. Sustained engagement with questions of justice and equity during research ethics training will help support students for involvement in global health research.
Ethics of Research into Learning and Teaching with Web 2.0: Reflections on Eight Case Studies
Chang, Rosemary L.; Gray, Kathleen
The unique features and educational affordances of Web 2.0 technologies pose new challenges for conducting learning and teaching research in ways that adequately address ethical issues of informed consent, beneficence, respect, justice, research merit and integrity. This paper reviews these conceptual bases of human research ethics and gives…
Human reproductive cloning and biotechnology: Rational, ethical and public concerns
Directory of Open Access Journals (Sweden)
M.E.S. (Elbie van den Berg
Full Text Available Previous research indicates a lack of clear international guidelines on the permissibility of embryonic stem cell research and human reproductive cloning. These studies suggest that this is the result of severe criticism from uninformed publics, whose arguments are based on misconceptions influenced by popular literature and science fiction films. However, the current research argues that public cloning attitudes that are based on real social and ethical concerns should be deployed to direct social and legal policy-making on human reproductive cloning. Addressing public concerns about human reproductive cloning is essential in exploring sound avenues for sensible biotechnology and policy-making. The research, on which this article reported, intended to give a critical evaluation of some major arguments for and against human reproductive cloning in order to establish whether or not these arguments hold up well under rational interrogation. Notwithstanding the author's critical attitude to uninformed opinions, false assumptions and unsound conclusions about the complex issue of human reproductive cloning, the author argued from the perspective that every life phenomenon is inextricably intertwined with everything else, and part of larger complex webs of interactions. Such a perspective recognised that the well-being of other human beings, including future human clones, is not only an existential, social and moral imperative but also epistemological. Against the backdrop of this perspective, critical questions arose that justified the creation of human clones in the face of possible defects and abnormalities in cloned children, as well as the possible harm to societies.
Multisite Research Ethics Review: Problems and Potential Solutions
Directory of Open Access Journals (Sweden)
Ferguson, Aidan
Full Text Available Large scale, multisite clinical research trials have been increasing in frequency. As it stands currently, a research project performed at multiple institutions requires ethics review at each institution. While local (institutional review may be necessary in some instances, repetitive reviews may require unnecessary changes and not serve to further protect participants. Multiple ethics reviews of a single study have been shown to delay research and require, in some cases, significant resources in order to fulfill the requests of individual ethics boards. This literature review discusses the conceptual issues and outlines empirical research surrounding multisite ethics review from different jurisdictions, as well as alternative methods to streamline the ethics review process including reciprocal review, centralized review, and a proposed modification to the centralized review process.
Some Ethical Considerations in Astronomy Research and Practice
Koepsell, David
Research ethics as an applied field has evolved due to a number of contentious and public lapses in ethical judgment over the past hundred years. But the main principles underlying good, ethical behavior in all of the sciences are rooted in what Robert Merton calls the ethos of science. Values and virtues, including the universal nature of its underlying objects, communal nature of scientific research, the necessity for individual disinterestedness on the part of researchers, and science's nature as organized skepticism, provide a foundation for conducting ethical research. Scientific integrity, the relation between basic science and the general public, and the social role of science all argue for adopting virtues, guiding behavior, and pursing science in ways we can now characterize as ethical in themselves. Being a good scientist and doing good science overlaps significantly with being a good person.
Using Social Media as a Research Recruitment Tool: Ethical Issues and Recommendations.
Gelinas, Luke; Pierce, Robin; Winkler, Sabune; Cohen, I Glenn; Lynch, Holly Fernandez; Bierer, Barbara E
The use of social media as a recruitment tool for research with humans is increasing, and likely to continue to grow. Despite this, to date there has been no specific regulatory guidance and there has been little in the bioethics literature to guide investigators and institutional review boards (IRBs) faced with navigating the ethical issues such use raises. We begin to fill this gap by first defending a nonexceptionalist methodology for assessing social media recruitment; second, examining respect for privacy and investigator transparency as key norms governing social media recruitment; and, finally, analyzing three relatively novel aspects of social media recruitment: (i) the ethical significance of compliance with website "terms of use"; (ii) the ethics of recruiting from the online networks of research participants; and (iii) the ethical implications of online communication from and between participants. Two checklists aimed at guiding investigators and IRBs through the ethical issues are included as appendices.
Ethics by opinion poll? The functions of attitudes research for normative deliberations in medical ethics.
Salloch, Sabine; Vollmann, Jochen; Schildmann, Jan
Empirical studies on people's moral attitudes regarding ethically challenging topics contribute greatly to research in medical ethics. However, it is not always clear in which ways this research adds to medical ethics as a normative discipline. In this article, we aim to provide a systematic account of the different ways in which attitudinal research can be used for normative reflection. In the first part, we discuss whether ethical judgements can be based on empirical work alone and we develop a sceptical position regarding this point, taking into account theoretical, methodological and pragmatic considerations. As empirical data should not be taken as a direct source for normative justification, we then delineate different ways in which attitudes research can be combined with theoretical accounts of normative justification in the second part of the article. Firstly, the combination of attitudes research with normative-ethical theories is analysed with respect to three different aspects: (a) The extent of empirical data which is needed, (b) the question of which kind of data is required and (c) the ways in which the empirical data are processed within the framework of an ethical theory. Secondly, two further functions of attitudes research are displayed which lie outside the traditional focus of ethical theories: the exploratory function of detecting and characterising new ethical problems, and the field of 'moral pragmatics'. The article concludes with a methodological outlook and suggestions for the concrete practice of attitudinal research in medical ethics. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
Ethical Issues of Behavior Modification Research in Schools
O'Leary, Susan G.; O'Leary, K. Daniel
In order to foster the responsible use of behavior modification procedures in the schools on a practical as well as a research basis, this article discusses ethical issues being considered by researchers and the involved public. (Author)
Medical ethics, bioethics and research ethics education perspectives in South East Europe in graduate medical education.
Mijaljica, Goran
Ethics has an established place within the medical curriculum. However notable differences exist in the programme characteristics of different schools of medicine. This paper addresses the main differences in the curricula of medical schools in South East Europe regarding education in medical ethics and bioethics, with a special emphasis on research ethics, and proposes a model curriculum which incorporates significant topics in all three fields. Teaching curricula of Medical Schools in Bulgaria, Bosnia and Herzegovina, Croatia, Serbia, Macedonia and Montenegro were acquired and a total of 14 were analyzed. Teaching hours for medical ethics and/or bioethics and year of study in which the course is taught were also analyzed. The average number of teaching hours in medical ethics and bioethics is 27.1 h per year. The highest national average number of teaching hours was in Croatia (47.5 h per year), and the lowest was in Serbia (14.8). In the countries of the European Union the mean number of hours given to ethics teaching throughout the complete curriculum was 44. In South East Europe, the maximum number of teaching hours is 60, while the minimum number is 10 teaching hours. Research ethics topics also show a considerable variance within the regional medical schools. Approaches to teaching research ethics vary, even within the same country. The proposed model for education in this area is based on the United Nations Educational, Scientific and Cultural Organization Bioethics Core Curriculum. The model curriculum consists of topics in medical ethics, bioethics and research ethics, as a single course, over 30 teaching hours.
Animal research ethics in Africa: is Tanzania making progress?
Seth, Misago; Saguti, Fredy
The significance of animals in research cannot be over-emphasized. The use of animals for research and training in research centres, hospitals and schools is progressively increasing. Advances in biotechnology to improve animal productivity require animal research. Drugs being developed and new interventions or therapies being invented for cure and palliation of all sorts of animal diseases and conditions need to be tested in animals for their safety and efficacy at some stages of their development. Drugs and interventions for human use pass through a similar development process and must be tested pre-clinically in laboratory animals before clinical trials in humans can be conducted. Therefore, animals are important players in research processes which directly and indirectly benefit animals and humans. However, questions remain as to whether these uses of animals consider the best interests of animals themselves. Various research and training institutions in Tanzania have established some guidelines on animal use, including establishing animal ethics committees. However, most institutions have not established oversight committees. In institutions where there may be guidelines and policies, there are no responsible committees or units to directly oversee if and how these guidelines and policies are enforced; thus, implementation becomes difficult or impossible. This paper endeavours to raise some issues associated with the responsible use of animals in research and training in Tanzania and highlights suggestions for improvement of deficiencies that exist in order to bridge the gap between what ought to be practised and what is practised. © 2012 John Wiley & Sons Ltd.
Ethical and regulatory issues arising from proteomic research and technology.
Reymond, Marc A; Steinert, Ralf; Eder, Frank; Lippert, Hans
Over the last two decades, medical research has begun to make extensive use of products of human origin in therapeutics, oncology, and most recently, in genetic diseases. This has raised many ethical issues involving patient rights, including issues of consent. Besides informed consent, researchers should address several topics when designing studies using human tissues. Reward for the patient should be kept minimal. Sample transfer should be organized along non-profit lines, at least in Europe. Sampling procedures should be at no risk for human volunteers, and at minimal risk for patients. Biosafety aspects should be addressed, in particular when international collaborations are intended or when collaboration is existing between academia and industry. Regulations on importation and exportation of human tissues should be observed. Data acquisition and storage should be addressed in accordance with national data protection regulations, in particular when using computerized databases. If follow-up information is to be taken, the authorization for such information should be requested. The right for patient's information (or for no information) on the research results should also be addressed. The issues of validation and patenting should be also solved, usually by informing the patient that he/she will have no commercial rights on potential research results. The patient should be told if the samples are transferred to another research laboratory or private company. Samples and related data should be destroyed on request at any time point during the course of the study. If possible, traceability of the donor should be ensured.
The ethics and editorial challenges of internet-based research
Harriman, Stephanie; Patel, Jigisha
The internet has opened up vast possibilities for research. An increasing number of studies are being conducted using the internet as both a source of data and a venue for research. Use of the internet in research has created many challenges, not just for those conducting and reviewing the studies, but also for editors publishing this work. Two key issues raised by internet-based research are ethics approval and informed consent. While some guidance exists regarding the ethics and consent of ...
Ethical Issues in Qualitative E-Learning Research
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Heather Kanuka
Full Text Available In the mid 1980s education researchers began exploring the use of the Internet within teaching and learning practices, now commonly referred to as e-learning. At the same time, many e-learning researchers were discovering that the application of existing ethical guidelines for qualitative research was resulting in confusion and uncertainty among both researchers and ethics review board members. Two decades later we continue to be plagued by these same ethical issues. On reflection on our research practices and examination of the literature on ethical issues relating to qualitative Internet- and Web-based research, the authors conclude that there are three main areas of confusion and uncertainty among researchers in the field of e-learning: (a participant consent, (b public versus private ownership, and (c confidentiality and anonymity.
Ethical challenges of conducting health research in UK school setting.
Milnes, Linda; Kendal, Sarah
This paper offers guidance for novice nurse researchers on the ethical and methodological challenges of conducting health research in high school settings. Over the course of two studies in UK high schools with students aged 11-16 years, the authors encountered common ethical and methodological challenges. This article draws on these studies to build a critique of approaches to health research in school settings. Issues of consent and assent, confidentiality and participation can highlight tensions between the expectations of schools and health researchers. In this context, feasible research designs raise complex ethical and methodological questions. Ethical and methodological norms for health research may not be suitable for high school settings. Successful school-based health research designs may need to be flexible and responsive to the social environment of schools.
Ethical research in partnership with an Indigenous community.
Weston, Richard; Brooks, Robert; Gladman, Justin; Senior, Kate; Denley, Louise; Silove, Derrick; Whyman, Nola; Kickett, Mark; Bryant, Richard; Files, Justin
The aim of this paper is to describe the implementation of the Community Safety Research Project (CSRP) focusing on violence prevention among Aboriginal communities in western NSW in order to examine how practice converges with contemporary ethical guidelines. A comparison was made of key project elements with the principles outlined in existing ethical guidelines, outlining the concrete issues that need to be confronted in practice. The approach being pursued is consonant with the principles of contemporary guidelines; the results of the first phase qualitative study inquiring into workers' perceptions of violence revealed some differences in the understanding of violence between Aboriginal and non-Aboriginal workers, with some ethical implications. Ethical approaches to research among Aboriginal communities include, but extend well beyond, the principle of avoiding harm. A comprehensive approach to ethical research requires significant ongoing expenditure of effort and resources with implications for project development, management and funding.
Can artificial parthenogenesis sidestep ethical pitfalls in human therapeutic cloning? An historical perspective
Fangerau, H
The aim of regenerative medicine is to reconstruct tissue that has been lost or pathologically altered. Therapeutic cloning seems to offer a method of achieving this aim; however, the ethical debate surrounding human therapeutic cloning is highly controversial. Artificial parthenogenesis—obtaining embryos from unfertilised eggs—seems to offer a way to sidestep these ethical pitfalls. Jacques Loeb (1859–1924), the founding father of artificial parthogenesis, faced negative public opinion when he published his research in 1899. His research, the public's response to his findings, and his ethical foundations serve as an historical argument both for the communication of science and compromise in biological research. PMID:16319240
ORIGINAL ARTICLES HIV vaccine research – South Africa's ethical ...
African Journals Online (AJOL)
firstname.lastname@example.com). HIV vaccine research – South Africa's ethical-legal framework and its ability to promote the welfare of trial participants. Ann Strode, Catherine Slack, Muriel Mushariwa. An effective ethical-legal framework for the conduct of ...
Research as Relationship: Ethics and School-University Collaboration.
Vare, Jonatha W.
This paper illustrates a researcher/teacher's "situated," (using the workplace as a cultural context) and "gendered" (following the female's subjective preference for context and relationship) understanding of ethics and school-university collaboration. It discusses two ethical issues that arise when school and university…
Ethical responsibilities in nursing: research findings and issues.
Cassidy, V R
Discussions in the literature assert that nurses are becoming increasingly cognizant of their ethical responsibilities, but that they are often ill prepared to participate in ethical decision making. A review of selected research literature from 1970 to 1987 was undertaken to validate these assertions. A total of 12 studies related to ethical responsibilities was identified in the review; all studies were published between 1980 and 1987. The majority of studies were at the descriptive and exploratory levels and employed Kohlberg's cognitive theory of moral development as their conceptual framework. Significant findings related to educational level and ethical responsibilities were consistent across studies. Findings related to age and clinical experience were mixed; the effects of economic level, religion-religiosity, ethnicity, and other variables on ethical responsibilities were not significant. Issues raised in the light of the existing research include the use of Kohlberg's theory as a conceptual orientation in nursing groups and limited data on the reliability and validity of instruments used in measuring ethical constructs. Recommendations for future research on ethical responsibilities include the validation of Kohlberg's theory for nursing investigations, exploration of other frameworks for developing a multidimensional view of ethical responsibilities, and the use of qualitative research designs.
A Pilot Study of Biomedical Trainees' Perceptions Concerning Research Ethics.
Kalichman, Michael W.; Friedman, Paul J.
A survey of 549 biomedical trainees (graduate and postdoctoral students, medical students, residents, fellows) investigated training in research ethics, observation of scientific misconduct, and willingness to select, omit, or fabricate data to win a grant or publish a paper. The efficacy of current ethics instruction is questioned. (Author/MSE)
From global bioethics to ethical governance of biomedical research collaborations.
Wahlberg, Ayo; Rehmann-Sutter, Christoph; Sleeboom-Faulkner, Margaret; Lu, Guangxiu; Döring, Ole; Cong, Yali; Laska-Formejster, Alicja; He, Jing; Chen, Haidan; Gottweis, Herbert; Rose, Nikolas
One of the features of advanced life sciences research in recent years has been its internationalisation, with countries such as China and South Korea considered 'emerging biotech' locations. As a result, cross-continental collaborations are becoming common generating moves towards ethical and legal standardisation under the rubric of 'global bioethics'. Such a 'global', 'Western' or 'universal' bioethics has in turn been critiqued as an imposition upon resource-poor, non-Western or local medical settings. In this article, we propose that a different tack is necessary if we are to come to grips with the ethical challenges that inter-continental biomedical research collaborations generate. In particular we ask how national systems of ethical governance of life science research might cope with increasingly global research collaborations with a focus on Sino-European collaboration. We propose four 'spheres' - deliberation, regulation, oversight and interaction - as a helpful way to conceptualise national systems of ethical governance. Using a workshop-based mapping methodology (workshops held in Beijing, Shanghai, Changsha, Xian, Shenzen and London) we identified three specific ethical challenges arising from cross-continental research collaborations: (1) ambiguity as to which regulations are applicable; (2) lack of ethical review capacity not only among ethical review board members but also collaborating scientists; (3) already complex, researcher-research subject interaction is further complicated when many nationalities are involved. Copyright © 2013 Elsevier Ltd. All rights reserved.
Developing the ethics of implementation research in health.
Gopichandran, Vijayaprasad; Luyckx, Valerie A; Biller-Andorno, Nikola; Fairchild, Amy; Singh, Jerome; Tran, Nhan; Saxena, Abha; Launois, Pascal; Reis, Andreas; Maher, Dermot; Vahedi, Mahnaz
Implementation research (IR) is growing in recognition as an important generator of practical knowledge that can be translated into health policy. With its aim to answer questions about how to improve access to interventions that have been shown to work but have not reached many of the people who could benefit from them, IR involves a range of particular ethical considerations that have not yet been comprehensively covered in international guidelines on health research ethics. The fundamental ethical principles governing clinical research apply equally in IR, but the application of these principles may differ depending on the IR question, context, and the nature of the proposed intervention. IR questions cover a broad range of topics that focus on improving health system functioning and improving equitable and just access to effective health care interventions. As such, IR designs are flexible and often innovative, and ethical principles cannot simply be extrapolated from their applications in clinical research. Meaningful engagement with all stakeholders including communities and research participants is a fundamental ethical requirement that cuts across all study phases of IR and links most ethical concerns. Careful modification of the informed consent process may be required in IR to permit study of a needed intervention. The risks associated with IR may be difficult to anticipate and may be very context-specific. The benefits of IR may not accrue to the same groups who participate in the research, therefore justifying the risks versus benefits of IR may be ethically challenging. The expectation that knowledge generated through IR should be rapidly translated into health policy and practice necessitates up-front commitments from decision-makers to sustainability and scalability of effective interventions. Greater awareness of the particular ethical implications of the features of IR is urgently needed to facilitate optimal ethical conduct of IR and uniform
Ethics of orthodontic clinical research based on Helsinki declaration
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Eka Erwansyah
Full Text Available Declaration of Helsinki code of ethics on human experimentation, states that the desin and peformance of experimental procedures involving human should be clearly formulated in an experimental protocol, Todeterminewhetheraninvestigationin accordancewiththe code of conductin a researchthen letusconsider the contentofthe declarationhelsinkiasour referencein conductingaclinicalstudyusinghuman subjects. In journals, authors are expected to report if the study was carried out in accordance with international and national ethical guidelines and inform readers if approval from ethics committee was obtained and if written informed consent was taken from the participant or legal guardian.
Ethical considerations in research. Focus on vulnerable groups
Directory of Open Access Journals (Sweden)
Shaké Ketefian
Full Text Available The purpose of this paper was to describe the need to protect the rights of human subjects participating in nursing research, and procedures for doing so. The path taken to the task at hand was to approach the topic by discussing the philosophical underpinnings of human subject protection and describing the approach for doing this in all cases where humans are used as research subjects. These underpinnings include specific ethical principles of respect for persons, beneficence, and justice, and the procedures used in the U.S. for protecting the rights of human subjects. Once the process was clarified, the considerations necessary to protect the special groups referred to as ''vulnerable'' are discussed. Given the author's access to U.S. documents and the fact that U.S. government agencies took early steps to formalize rules and regulations for the protection of human subjects, vulnerable or otherwise, the experience of the United States was selected for presentation. It is recognized that there are now relevant international documents that are exceedingly helpful, and also, that various countries may have their own guidelines for investigators to follow. In such cases researchers can engage in comparative analysis between their own guidance and the processes described here, and decide their path accordingly.
Science, human nature, and a new paradigm for ethics education.
Lampe, Marc
For centuries, religion and philosophy have been the primary basis for efforts to guide humans to be more ethical. However, training in ethics and religion and imparting positive values and morality tests such as those emanating from the categorical imperative and the Golden Rule have not been enough to protect humankind from its bad behaviors. To improve ethics education educators must better understand aspects of human nature such as those that lead to "self-deception" and "personal bias." Through rationalizations, faulty reasoning and hidden bias, individuals trick themselves into believing there is little wrong with their own unethical behavior. The application of science to human nature offers the possibility of improving ethics education through better self-knowledge. The author recommends a new paradigm for ethics education in contemporary modern society. This includes the creation of a new field called "applied evolutionary neuro-ethics" which integrates science and social sciences to improve ethics education. The paradigm can merge traditional thinking about ethics from religious and philosophical perspectives with new ideas from applied evolutionary neuro-ethics.
What research ethics should learn from genomics and society research: lessons from the ELSI Congress of 2011.
Henderson, Gail E; Juengst, Eric T; King, Nancy M P; Kuczynski, Kristine; Michie, Marsha
Research on the ethical, legal, and social implications (ELSI) of human genomics has devoted significant attention to the research ethics issues that arise from genomic science as it moves through the translational process. Given the prominence of these issues in today's debates over the state of research ethics overall, these studies are well positioned to contribute important data, contextual considerations, and policy arguments to the wider research ethics community's deliberations, and ultimately to develop a research ethics that can help guide biomedicine's future. In this essay, we illustrate this thesis through an analytic summary of the research presented at the 2011 ELSI Congress, an international meeting of genomics and society researchers. We identify three pivotal factors currently shaping genomic research, its clinical translation, and its societal implications: (1) the increasingly blurred boundary between research and treatment; (2) uncertainty--that is, the indefinite, indeterminate, and incomplete nature of much genomic information and the challenges that arise from making meaning and use of it; and (3) the role of negotiations between multiple scientific and non-scientific stakeholders in setting the priorities for and direction of biomedical research, as it is increasingly conducted "in the public square." © 2012 American Society of Law, Medicine & Ethics, Inc.
An analysis of decision letters by research ethics committees: the ethics/scientific quality boundary examined.
Angell, E L; Bryman, A; Ashcroft, R E; Dixon-Woods, M
The performance of NHS research ethics committees (RECs) is of growing interest. It has been proposed that they confine themselves to "ethical" issues only and not concern themselves with the quality of the science. This study aimed to identify current practices of RECs in relation to scientific issues in research ethics applications. Letters written by UK RECs expressing provisional or unfavourable opinions in response to submitted research applications were sampled from the research ethics database held by the Central Office for Research Ethics Committees. Ethnographic content analysis (ECA) was used to develop a coding framework. QSR N6 software was used to facilitate coding. "Scientific issues" were raised in 104 (74%) of the 141 letters in our sample. The present data suggest that RECs frequently considered scientific issues and that judgments of these often informed their decisions about approval of applications. Current processes of peer review seemed insufficient to reassure RECs about the scientific quality of applications they were asked to review. This study provides evidence that scientific issues are frequently raised in letters to researchers and are often considered a quality problem by RECs. In the discussion, the authors reflect on how far issues of science can and should be distinguished from those of ethics and the policy implications.
Using empirical research to formulate normative ethical principles in biomedicine.
Ebbesen, Mette; Pedersen, Birthe D
Bioethical research has tended to focus on theoretical discussion of the principles on which the analysis of ethical issues in biomedicine should be based. But this discussion often seems remote from biomedical practice where researchers and physicians confront ethical problems. On the other hand, published empirical research on the ethical reasoning of health care professionals offer only descriptions of how physicians and nurses actually reason ethically. The question remains whether these descriptions have any normative implications for nurses and physicians? In this article, we illustrate an approach that integrates empirical research into the formulation of normative ethical principles using the moral-philosophical method of Wide Reflective Equilibrium (WRE). The research method discussed in this article was developed in connection with the project 'Bioethics in Theory and Practice'. The purpose of this project is to investigate ethical reasoning in biomedical practice in Denmark empirically. In this article, we take the research method as our point of departure, but we exclusively discuss the theoretical framework of the method, not its empirical results. We argue that the descriptive phenomenological hermeneutical method developed by Lindseth and Norberg (2004) and Pedersen (1999) can be combined with the theory of WRE to arrive at a decision procedure and thus a foundation for the formulation of normative ethical principles. This could provide health care professionals and biomedical researchers with normative principles about how to analyse, reason and act in ethically difficult situations in their practice. We also show how to use existing bioethical principles as inspiration for interpreting the empirical findings of qualitative studies. This may help researchers design their own empirical studies in the field of ethics.
Beyond procedural ethics: Foregrounding questions of justice in global health research ethics training for students
Hunt, Matthew R.; Godard, Beatrice
Interest in global health is growing among students across many disciplines and fields of study. In response, an increasing number of academic programmes integrate and promote opportunities for international research, service or clinical placements. These activities raise a range of ethical issues and are associated with important training needs for those who participate. In this paper, we focus on research fieldwork conducted in lower income nations by students from more affluent countries and the ethics preparation they would benefit from receiving prior to embarking on these projects. Global health research is closely associated with questions of justice and equity that extend beyond concerns of procedural ethics. Research takes place in and is shaped by matrices of political, social and cultural contexts and concerns. These realities warrant analysis and discussion during research ethics training. Training activities present an opportunity to encourage students to link global health research to questions of global justice, account for issues of justice in planning their own research, and prepare for 'ethicsin-practice' issues when conducting research in contexts of widespread inequality. Sustained engagement with questions of justice and equity during research ethics training will help support students for involvement in global health research. PMID:23706108
Research ethics for a globalised world: the revised CIOMS international guidelines.
Ehni, Hans-Jöerg; Wiesing, Urban
On December 6, 2016, the Council of International Organisations of Medical Sciences published a new version of its guidelines with the title "International Ethical Guidelines for Health-related Research Involving Humans." In this article we briefly describe the revision process and the structure and content of these guidelines. We outline some of its main guidelines such as the ones on social value, post-trial access, and risk-benefit ratio. In our overall evaluation we come to the conclusion that the CIOMS guidelines manage to strike a balance between the protection of human participants in health-related research and the promotion of such research activities in an exemplary way. The guidelines combine key principles with a guide to their application based on the state of the art in research ethics. Thus they represent a timely and indispensable orientation for researchers, ethics committees, and other stakeholders in health-related research.
Ethical perception of human gene in transgenic banana | Amin ...
African Journals Online (AJOL)
Transgenic banana has been developed to prevent hepatitis B through vaccination. Its production seems to be an ideal alternative for cheaper vaccines. The objective of this paper is to assess the ethical perception of transgenic banana which involved the transfer of human albumin gene, and to compare their ethical ...
Research ethics in the post-genomic era.
Vähäkangas, Kirsi
New high-throughput 'omics techniques are providing exciting opportunities in clinical medicine and toxicology, especially in the development of biomarkers. In health science research there are traditional ethical considerations that are reasonably obvious, like balancing health benefits and health risks, autonomy mainly pursued by informed consent, and protecting privacy. Epidemiological studies applying new large-scale approaches (e.g., high-throughput or high-content methods and global studies that utilize biobanking of samples and produce large-scale datasets) present new challenges that call for re-evaluation of standard ethical considerations. In this context, assessment of the ethics underlying study designs, bioinformatics, and statistics applied in the generation and clinical translation of research results should also be considered. Indeed, there are ethical considerations in the research process itself, in research objectives and how research is pursued (e.g., which methodologies are selected and how they are carried out). Maintaining research integrity is critical, as demonstrated by the relatively frequent retraction of scientific papers following violations of good scientific practice. Abiding by the laws is necessary but not sufficient for good research ethics, which is and remains in the hands of the scientific community at the level of both individual scientists and organizations. Senior scientists are responsible for the transfer of research tradition to the next generation of scientists through education, mentorship, and setting an example by their own behavior, as well as by creating systems in institutions that support good research ethics. Copyright © 2013 Wiley Periodicals, Inc.
Analytical and ethical complexities in video game research
DEFF Research Database (Denmark)
Andersen, Mads Lund; Chimiri, Niklas Alexander; Søndergaard, Dorte Marie
Session: Sociomaterial complexities in digital-analog spaces Abstract: Analytical and ethical complexities in video game research A central issue that video game research seldom explicitly articulates is the ethical complexities involved in its empirical and analytical work. The presentation...... explores common research questions posed and analytical foci chosen by video game researchers subscribing to either the media effects tradition, represented by (ref.) or to interdisciplinary Game Studies. Both fields, which tend to depict themselves as polar-opposites, build on ethical assumptions...... of theoretical or analytical arrogance. The relevance of acknowledging and situating ethical complexity becomes pertinent when alternatively taking a sociomaterial perspective on doing empirical and analytical work on video gaming. From an agential realist point of view, for instance, a researcher...
Ethics and the ethnography of medical research in Africa
Molyneux, Sassy; Geissler, P. Wenzel
The ethics of medical research have grown as an area of expertise and debate in recent years, with two broad approaches emerging in relation to transnational research: (1) the refinement of guidelines and strengthening of review, processes primarily to protect the right of individual research participants and strengthen interpersonal relations at the micro-level; and (2) considering more centrally, as crucial ethical concerns, the wider interests of whole populations, the functioning of research institutions, the processes of collaboration, and the ethics of inequitable international relations. We see the two areas of debate and action as complementary, and believe that social science conducted in and around transnational medical research environments can bring these two perspectives together in a more 'situated ethics' of research. To explore this idea for medical research in Africa, we organized a conference in December 2005 in Kilifi, Kenya. In this introduction we outline the two emerging approaches to medical ethics, summarise each of seven papers selected from the conference for inclusion in this special issue on ethics and ethnography, and finally highlight two areas of lively debate at the conference itself: the appropriateness and value of ethics guidelines and review boards for medical research; and the ethical review of social science research. Together, the papers and debates point to the importance of focusing on the ethics of relationships and on justice in both biomedicine and social science research, and on giving greater voice and visibility to the field staff who often play a crucial and under-supported role in 'doing ethics' in the field. They also point to the potential value of social science research on the range of relationships operating at different levels and time scales in medical research, including those surrounding community engagement activities, and the role and functioning of ethics review boards. We conclude by highlighting
Difficulties and challenges in reviewing ethical aspects of research in Brazil.
Lopes Júnior, Luís Carlos; Nascimento, Lucila Castanheira; Lima, Regina Aparecida Garcia de; Coelho, Eduardo Barbosa
Objective To reflect on the problems faced by researchers from different areas, especially of Humanities and Social Sciences, when submitting research projects for evaluation by the research ethics committees in Brazil. Method A theoretical and reflective study based on international literature and the critical analysis of the authors. Results Although Resolution 466/2012, which addresses human research, contains some innovations, issues related to the research participants remain obscure and the project evaluation process is time-consuming. Conclusion The difficulties faced by researchers, especially in the fields of Humanities and Social Sciences, must be transposed to ensure that the ethical guidelines are applicable, in terms of principles and procedures, to the different research traditions. Appropriate human research standards must be managed by a system with a satisfactory operational capacity, according to the specificities of the different areas of knowledge.
Ethical issues relating to supply of human tissue to the commercial biomedical sector.
Womack, Christopher
Demand for an ethical supply of human tissue for research in the commercial biomedical sector is increasing substantially. This article sets out to review ethical issues specifically relating to acquisition of tissue from patients in a publicly funded national health service (NHS), for research use in a commercial setting. Some of the background to recent high profile Inquiries in England is discussed and is used to illustrate legal and ethical differences between living and dead people. Issues relating to patient consent are investigated and the case is made for a clear distinction between tissue acquisition and tissue processing. Future possibilities for regulation are discussed.
Analytical and ethical complexities in video game research
DEFF Research Database (Denmark)
Andersen, Mads Lund; Chimirri, Niklas Alexander; Søndergaard, Dorte Marie
A central issue that video game research seldom explicitly articulates are the ethical complexities involved in its empirical and analytical work. The presentation explores common research questions posed and analytical foci chosen by video game researchers subscribing to either the media effects...... tradition or to interdisciplinary Game Studies. Both fields, which tend to depict themselves as standing in opposition to one another, build on ethical assumptions that are deeply engrained in their respective research questions, analytical concepts and methodological tools. However, these ethical...... presumptions are little addressed in their respective discussions. The relevance of acknowledging and situating ethical complexity becomes pertinent when alternatively taking a sociomaterial perspective on doing empirical and analytical work on video gaming. From an agential realist point of view, for instance...
Photovoice Ethics: Critical Reflections From Men's Mental Health Research.
Creighton, Genevieve; Oliffe, John L; Ferlatte, Olivier; Bottorff, Joan; Broom, Alex; Jenkins, Emily K
As photovoice continues to grow as a method for researching health and illness, there is a need for rigorous discussions about ethical considerations. In this article, we discuss three key ethical issues arising from a recent photovoice study investigating men's depression and suicide. The first issue, indelible images, details the complexity of consent and copyright when participant-produced photographs are shown at exhibitions and online where they can be copied and disseminated beyond the original scope of the research. The second issue, representation, explores the ethical implications that can arise when participants and others have discordant views about the deceased. The third, vicarious trauma, offers insights into the potenial for triggering mental health issues among researchers and viewers of the participant-produced photographs. Through a discussion of these ethical issues, we offer suggestions to guide the work of health researchers who use, or are considering the use of, photovoice.
Principles for the ethical analysis of clinical and translational research
Gelfond, Jonathan A. L.; Heitman, Elizabeth; Pollock, Brad H.; Klugman, Craig M.
Statistical analysis is a cornerstone of the scientific method and evidence-based medicine, and statisticians serve an increasingly important role in clinical and translational research by providing objective evidence concerning the risks and benefits of novel therapeutics. Researchers rely on statistics and informatics as never before to generate and test hypotheses and to discover patterns of disease hidden within overwhelming amounts of data. Too often, clinicians and biomedical scientists are not adequately proficient in statistics to analyze data or interpret results, and statistical expertise may not be properly incorporated within the research process. We argue for the ethical imperative of statistical standards, and we present ten nontechnical principles that form a conceptual framework for the ethical application of statistics in clinical and translational research. These principles are drawn from the literature on the ethics of data analysis and the American Statistical Association Ethical Guidelines for Statistical Practice. PMID:21751225
Ethical issues posed by cluster randomized trials in health research
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Donner Allan
Full Text Available Abstract The cluster randomized trial (CRT is used increasingly in knowledge translation research, quality improvement research, community based intervention studies, public health research, and research in developing countries. However, cluster trials raise difficult ethical issues that challenge researchers, research ethics committees, regulators, and sponsors as they seek to fulfill responsibly their respective roles. Our project will provide a systematic analysis of the ethics of cluster trials. Here we have outlined a series of six areas of inquiry that must be addressed if the cluster trial is to be set on a firm ethical foundation: 1. Who is a research subject? 2. From whom, how, and when must informed consent be obtained? 3. Does clinical equipoise apply to CRTs? 4. How do we determine if the benefits outweigh the risks of CRTs? 5. How ought vulnerable groups be protected in CRTs? 6. Who are gatekeepers and what are their responsibilities? Subsequent papers in this series will address each of these areas, clarifying the ethical issues at stake and, where possible, arguing for a preferred solution. Our hope is that these papers will serve as the basis for the creation of international ethical guidelines for the design and conduct of cluster randomized trials.
Exploring Ethical and Methodological Issues in Internet-Based Research with Adolescents
Directory of Open Access Journals (Sweden)
Heather T. Battles PhD candidate
Full Text Available Internet-based research is a relatively new and growing field that presents a number of ethical challenges regarding privacy, confidentiality, and informed consent. In light of a study examining discussions regarding the human papillomavirus (HPV vaccine on a publicly viewable Internet message board among primarily American, Australian, and Canadian female adolescents and young adults, the author discusses the methodological and ethical concerns surrounding Internet-based qualitative research with youth. The author first provides some contextual background about the study and issues surrounding the HPV vaccine. She describes her methods of data collection and analysis and provides a summary of the results. The author then explores a number of ethical issues that arise in Internet-based research and examines her own ethical decision-making as informed by existing discussions and guidelines in this area.
Silver Bells and Cockle Shells: A Study of the Conceptions of Teachers about Humane and Ethical Behavior between Colleagues.
Grant, Rosemary
Because the practice of humane and ethical behavior among faculty is crucial for a healthy and harmonious environment in a school, this research studied the conceptions of such behavior among a group of teachers through examination of personal narratives. The study identified situations and experiences where humane ethical behavior occurred…
Instrumental and ethical aspects of experimental research with animal models
Directory of Open Access Journals (Sweden)
Mirian Watanabe
Full Text Available Experimental animal models offer possibilities of physiology knowledge, pathogenesis of disease and action of drugs that are directly related to quality nursing care. This integrative review describes the current state of the instrumental and ethical aspects of experimental research with animal models, including the main recommendations of ethics committees that focus on animal welfare and raises questions about the impact of their findings in nursing care. Data show that, in Brazil, the progress in ethics for the use of animals for scientific purposes was consolidated with Law No. 11.794/2008 establishing ethical procedures, attending health, genetic and experimental parameters. The application of ethics in handling of animals for scientific and educational purposes and obtaining consistent and quality data brings unquestionable contributions to the nurse, as they offer subsidies to relate pathophysiological mechanisms and the clinical aspect on the patient.
Ethics in family violence research: cross-cultural issues.
Fontes, L A
This article examines ethical issues in cross-cultural research on family violence. It suggests ways for researchers to increase understanding and avoid abuses of power. Special attention to informed consent, definition of the sample, composition of the research team, research methods, and potential harm and benefit are considered key to designing ethical cross-cultural research. The discussion is illustrated with examples from the literature and from the author's experiences conducting research on sexual abuse in a shanty town in Chile and with Puerto Ricans in the U.S.
Overcoming the framing problem-a critical-ethical perspective on the need to integrate social sciences and humanities and stakeholder contributions in EURATOM radiation protection research.
Meskens, Gaston
This paper introduces the 'framing problem' as the problem of the limited potential of critical reflection on the societal justification and use of nuclear energy technology as a contribution to European radiation protection research, given that the research is itself driven by EURATOM's pro-nuclear political position. The idea is that the problem of policy framing could in principle be 'overcome' by the integration of social sciences and humanities and stakeholder contributions in that research, taking into account that this approach could help to raise critical awareness with the involved researchers and policy makers of the issues of fairness of risk justification in society and of the consequences thereof for nuclear energy policy and policy-supportive research itself.
Vulnerable participants in health research: methodological and ethical challenges
DEFF Research Database (Denmark)
Nordentoft, Helle Merete; Kappel, Nanna
Ethical guidelines for conducting research are embedded in the Helsinki Declaration of 1964. We contend that these abstract and intentionally universal guidelines need to be appropriated for social and healthcare research, in which purpose and methods often deviate from medical research. The guid......Ethical guidelines for conducting research are embedded in the Helsinki Declaration of 1964. We contend that these abstract and intentionally universal guidelines need to be appropriated for social and healthcare research, in which purpose and methods often deviate from medical research....... The guidelines appear to be instrumental and over-simplistic representations of the often 'messy' realities surrounding the research process that is often guided by relational and local negotiations of ethical solutions. Vulnerable participants, for instance, challenge both professional and research ethics......, leaving both professionals and researchers in ethical and moral dilemmas. In this article, we specifically focus on the methodological challenges of obtaining informed consent from drug users and terminally ill cancer patients in our PhD research. The question is how to illuminate the needs and problems...
Toward an Ethical Attitude in Mathematics Education Research Writing
Andersson, Annica; le Roux, Kate
In this article, the authors propose a set of multi-level questions as a guide for developing an ethical attitude in researcher--participant and researcher--researcher relations during the research writing process. Drawing on the sociopolitical turn in mathematics education, the authors view these relations in terms of power and positionings, in…
Perceptions of research risk and undue influence: Implications for ethics of research conducted with cocaine users.
Strickland, Justin C; Stoops, William W
Despite the prominence of human laboratory and clinical trial research in the development of interventions for substance use disorders, this research presents numerous ethical challenges. Ethical principles outlined in the Belmont Report, including respect for persons, beneficence, and justice, have traditionally guided research conduct. Few empirical studies exist examining substance abuse research ethics. The present study examined perceptions of beneficence and respect for persons in substance use research, including relative risk and desired monetary compensation, using an online sample of cocaine users. The study was conducted on Amazon.com's Mechanical Turk (mTurk), a crowdsourcing website used for survey-based research. Of 1764 individuals screened, 138 reported past year cocaine use. These respondents completed a battery of standardized and experimenter-designed questionnaires used to characterize each respondent's self-reported attitudes, beliefs, and behaviors about drug use and the relative risks and desired monetary compensation associated with research participation. Ratings of relative risk revealed that most respondents found common research practices as less than or equal to the relative risk of everyday life. Receiving experimental medication outside the hospital was rated as the most risky research activity, but on average was not rated as presenting more risk than everyday life. Desired compensation for research participation was associated with the perceived risk of research activities. Increases in desired compensation for participation were only observed for research perceived as much more risky than everyday activities. These findings indicate that cocaine users assess risk in a way that is consistent with standard research practice. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.
Science and ethics of human immunodeficiency virus/acquired immunodeficiency syndrome controversies in Africa.
Brewster, David
The human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) epidemic in Africa has raised important ethical issues for both researchers and clinicians. The most notorious controversy has been related to the zidovudine (AZT) trials in Africa in the late 1990s, in which the control groups were given a placebo rather than an effective drug to prevent vertical transmission. This raised concerns in the sponsoring country about exploitation of subjects, injustice and an ethical double standard between donor countries and resource-poor settings. However, the real double standard is between clinical practice standards in Western versus African countries, which must be addressed as part of the increasing global inequity of wealth both between countries and also within countries. There are important limitations to ethical declarations, principles and guidelines on their own without contextual ethical reasoning. The focus on research ethics with the HIV epidemic has led to a relative neglect of ethical issues in clinical practice. Although the scientific advances in HIV/AIDS have changed the ethical issues since the 1990s, there has also been progress in the bioethics of HIV/AIDS in terms of ethical review capability by local committees as well as in exposure to ethical issues by clinicians and researchers in Africa. However, serious concerns remain about the overregulation of research by bureaucratic agencies which could discourage African research on specifically African health issues. There is also a need for African academic institutions and researchers to progressively improve their research capacity with the assistance of research funders and donor agencies. © 2011 The Author. Journal of Paediatrics and Child Health © 2011 Paediatrics and Child Health Division (Royal Australasian College of Physicians).
The use of stem cells in research and therapies: Ethical, legal and ...
African Journals Online (AJOL)
Aug 2, 2015 ... Ethical, legal and social issues associated with health research in general are multiple and complex. The complexity increases when research involves human tissues, and in particular stem cells as the trajectory of the latter will include scientific and technological advances not previously explored.
Directory of Open Access Journals (Sweden)
Full Text Available "E-waste" is a popular, informal name for electronic products nearing the end of their "useful life". This includes discarded computers, televisions, VCRs, stereos, copiers, fax machines, electric lamps, cell phones, audio equipment and batteries. E-wastes are considered dangerous, as certain components of some of these electronic products contain materials; such as lead; that are hazardous, depending on their condition and density. If improperly disposed, E-wastes can leach lead and other substances into soil and groundwater posing a threat to human health and environment. Many of these electronic products can be reused, refurbished, or recycled in an environmentally sound manner so that they are less harmful to the ecosystem. This paper highlights the types and hazards of E-wastes particularly the computers' waste. The dimensions and ethicality of the problem in the third-world countries are reviewed. The needs for the appropriate management of e-waste and options that can be implemented are discussed. After reviewing the Islamic concepts for environmental protection, ethical implications for curriculum development as well research directions are highlighted. Elements for a course on e-waste as well as some across-the-curriculum topics are proposed. This is specially tailored to suit the faculty of Engineering at the International Islamic University-Malaysia.
The ethics of reflective research in single case study inquiry.
Winship, Gary
Recent developments in policy change in the governance of research ethics in the UK are reviewed and discussed regarding how the changes in informed consent impacts on single case study research. Changes in the ethics of health research (particularly in the UK) and informed patient consent have potentially negative implications for case study research where overregulated research guidance may impinge on patient treatment. The psychotherapy milieu is a highly protective environment where case study research design has, historically, been effectively applied without compromising clients' interests and treatment. A distinction between "prospective" and "reflective" psychotherapy research is proposed that offers an ethical foothold, protecting patients and allowing scope for practitioners to continue to advance knowledge from their reflective practice.
Navigating Ethics in the Digital Age: Introducing Connected and Open Research Ethics (CORE), a Tool for Researchers and Institutional Review Boards.
Torous, John; Nebeker, Camille
Research studies that leverage emerging technologies, such as passive sensing devices and mobile apps, have demonstrated encouraging potential with respect to favorably influencing the human condition. As a result, the nascent fields of mHealth and digital medicine have gained traction over the past decade as demonstrated in the United States by increased federal funding for research that cuts across a broad spectrum of health conditions. The existence of mHealth and digital medicine also introduced new ethical and regulatory challenges that both institutional review boards (IRBs) and researchers are struggling to navigate. In response, the Connected and Open Research Ethics (CORE) initiative was launched. The CORE initiative has employed a participatory research approach, whereby researchers and IRB affiliates are involved in identifying the priorities and functionality of a shared resource. The overarching goal of CORE is to develop dynamic and relevant ethical practices to guide mHealth and digital medicine research. In this Viewpoint paper, we describe the CORE initiative and call for readers to join the CORE Network and contribute to the bigger conversation on ethics in the digital age. ©John Torous, Camille Nebeker. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 08.02.2017.
Ethics policies and ethics work in cross-national genetic research and data sharing
DEFF Research Database (Denmark)
Hoeyer, Klaus; Tupasela, Aaro; Rasmussen, Malene B.
? We explore what we call the flows, the nonflows, and the overflows of material and information, and we document the work producing the flows of health data and biomaterial. We call this work "ethics work" and argue that it is crucial for data sharing though it is rarely articulated in ethics policies......In recent years, cross-national collaboration in medical research has gained increased policy attention. Policies are developed to enhance data sharing, ensure open-access, and harmonize international standards and ethics rules in order to promote access to existing resources and increase...... scientific output. In tandem with this promotion of data sharing, numerous ethics policies are developed to control data flows and protect privacy and confidentiality. Both sets of policy making, however, pay limited attention to the moral decisions and social ties enacted in the everyday routines...
A report on the significance of ethics in dental research in Iran
Directory of Open Access Journals (Sweden)
Mojgan Alaeddini
Full Text Available Morality and ethics constitute fundamental principles of professional, educational and investigational aspects of medicine and all its branches, including dentistry. There are specific considerations in dental research which could significantly affect the design and progress of scientific projects performed in this field. The aim of the current study was to present an overview of ethical concepts governing dental research and to provide examples of common issues raised during dentistry-related investigations. Establishment of human tooth banks in major research and training centers is suggested to enhance the process of conducting more substantial research in dentistry.
Ethnographic research through a liberationist lens: Ethical reflections on fieldwork
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Hankela, Elina
Full Text Available The article deals with four research-related ethical questions that stem from the authors experiences in fieldwork. The author employs the liberationist tradition as a sounding board in her reflection. This tradition gives rise to the ethical questions that she deals with, among other influences, and also works as a lens through which she navigates the ethical dilemmas. She argues that such ethical reflection is timely because of the increasing interest in ethnographic methods in theology and theological ethics. The liberationist lens which is consciously biased in its choice of socially marginalised people and groups as interlocutors and is geared towards just social transformation offers a useful approach to interrogating fieldwork ethics, also for scholars operating outside of the field of (liberation theology. Besides the key contribution of the article, that is, reflecting on the relevant ethical questions related to the research, the author suggests that a wider and more systematic usage of ethnographic tools could benefit the liberationist tradition, which indeed emphasises the importance of lived experience, at this point in time, when many of those writing in the liberationist tradition are full-time academics.
[Update of the work of the ethics research in evaluating genetic research and its role as an external ethics committee biobank].
Alfonso Farnós, Iciar; Hernández Gil, Arantza; Rodríguez Velasco, María
Research on human genome and its applications open great perspectives to improve human beings' health. However, these advances must never endanger the respect of dignity, freedom and rights of the participants in medical research, assuring prohibition of any way of discrimination because of genetic features. The Independent Research Boards (IRB), responsible for safeguarding rights, safety and well-being of the subjects taking part in the biomedical research, assess independently submitted genetic studies, clinical trials whose primary objective is obtaining genetic information and genetic sub-studies of clinical trials with drugs. Biobanks, as safeguarding means to preserve biological samples in suitable quality conditions, must be assigned to two external committees, a scientific one and an ethics one. External ethics committees of biobanks have to make the ethical assessment of the submissions of samples transfers and associated data, in order to carry out research projects. On the other hand, they have to advise biobanks on the compliance of ethical and legal principles, which, in many committees, has turned into the performance of informed consent forms which are in accordance with current laws.
A Brief History of Biomedical Research Ethics in Iran: Conflict of Paradigms.
Aramesh, Kiarash
During the past two decades, Iran has experienced a noteworthy growth in its biomedical research sector. At the same time, ethical concerns and debates resulting from this burgeoning enterprise has led to increasing attention paid to biomedical ethics. In Iran, Biomedical research ethics and research oversight passed through major periods during the past decades, separated by a paradigm shift. Period 1, starting from the early 1970s, is characterized by research paternalism and complete reliance on researchers as virtuous and caring physicians. This approach was in concordance with the paternalistic clinical practice of physicians outside of research settings during the same period. Period 2, starting from the late 1990s, was partly due to revealing of ethical flaws that occurred in biomedical research in Iran. The regulatory and funding bodies concluded that it was not sufficient to rely solely on the personal and professional virtues of researchers to safeguard human subjects' rights and welfare. The necessity for independent oversight, emphasized by international declarations, became obvious and undeniable. This paradigm shift led to the establishment of research ethics committees throughout the country, the establishment of academic research centers focusing on medical ethics (MEHR) and the compilation of the first set of national ethical guidelines on biomedical research-one of the first and most important projects conducted by and in the MEHR. Although not yet arrived, 'period 3' is on its way. It is predictable from the obvious trends toward performance of high-quality clinical research and the appearance of a highly educated new generation, especially among women. Published 2014. This article is a U.S. Government work and is in the public domain in the USA.
Research in Humans: Current Perspectives in Brazil
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Célia Alcantara Cunha Lima
Full Text Available This work addressed the norms of ethics for human experimentation in Brazil, operationalized by the National Research Ethics Commission (CONEP of the National Health Council (CNS. It analyzed international principles of bioethics as a theoretical framework for the Brazilian regulation. National and international publications were reviewed, by Capes periodicals, relating to historical ethical infractions, such as reflection to the current day. It analyzed the law (PL 200/2015 of the Senate, which proposes flexibilities in Brazilian legislation and concluded that the requested changes should be discussed in depth by bioethicists, scientists and Brazilian lawyers with extended discussion to society.
Process error rates in general research applications to the Human ...
African Journals Online (AJOL)
Objective. To examine process error rates in applications for ethics clearance of health research. Methods. Minutes of 586 general research applications made to a human health research ethics committee (HREC) from April 2008 to March 2009 were examined. Rates of approval were calculated and reasons for requiring ...
Rethinking Qualitative Research: Research Participants as Central Researchers and Enacting Ethical Practices as Habitus
Directory of Open Access Journals (Sweden)
Rowhea Elmesky
Full Text Available This article suggests that qualitative research group dynamics shape university researchers' capacities for expertly enacting ethical practices. Specifically, I assert that when research participants become the researchers, both university-based and community-based members of the research group have opportunities to deeply experience each other's life worlds. By spending time together as researchers, we can then develop ethical expertise that is fluid, unconscious, and implicitly appropriate for the community in which the research is being conducted. URN: urn:nbn:de:0114-fqs0503367
The ethics and editorial challenges of internet-based research.
Harriman, Stephanie; Patel, Jigisha
The internet has opened up vast possibilities for research. An increasing number of studies are being conducted using the internet as both a source of data and a venue for research. Use of the internet in research has created many challenges, not just for those conducting and reviewing the studies, but also for editors publishing this work. Two key issues raised by internet-based research are ethics approval and informed consent. While some guidance exists regarding the ethics and consent of internet-based research, and some institutions provide their own guidelines, there appears to be a lack of definitive national standards. We discuss the issues surrounding ethics and consent for internet-based research and the need for a consensus on how to address these issues to ensure consistency.
Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide.
Wolf, Susan M; Burke, Wylie; Koenig, Barbara A
Both bioethics and law have governed human genomics by distinguishing research from clinical practice. Yet the rise of translational genomics now makes this traditional dichotomy inadequate. This paper pioneers a new approach to the ethics of translational genomics. It maps the full range of ethical approaches needed, proposes a "layered" approach to determining the ethics framework for projects combining research and clinical care, and clarifies the key role that return of results can play in advancing translation. © 2015 American Society of Law, Medicine & Ethics, Inc.
Ethical issues in human reproduction: Islamic perspectives.
Serour, G I
Sexual and reproductive rights of women are essential components of human rights. They should never be transferred, renounced or denied for any reason based on race, religion, origin, political opinion or economic conditions. Women have the right to the highest attainable standard of health care for all aspects of their reproductive and sexual health (RSH). The principle of autonomy emphasizes the important role of women in the decision-making. Choices of women in reproduction, after providing evidence based information, should be respected. Risks, benefits and alternatives should be clearly explained before they make their free informed consent. Justice requires that all be treated with equal standard and have equal access to their health needs without discrimination or coercion. When resources are limited there is tension between the principle of justice and utility. Islamic perspectives of bioethics are influenced by primary Sharia namely the Holy Quran, authenticated traditions and saying of the Profit Mohamed (PBUH), Igmaa and Kias (analogy). All the contemporary ethical principles are emphasized in Islamic Shariaa, thus these principles should be observed when providing reproductive and sexual health services for Muslim families or communities. The Family is the basic unit in Islam. Safe motherhood, family planning, and quality reproductive and sexual health information and services and assisted reproductive technology are all encouraged within the frame of marriage. While the Shiaa sect permits egg donation, and surrogacy the Sunni sect forbids a third party contribution to reproduction. Harmful practices in RSH as FGM, child marriage and adolescent pregnancy are prohibited in Islam. Conscientious objection to treatment should not refrain the physician from appropriate referral.
Ethical issues regarding human cloning: a nursing perspective.
Dinç, Leyla
Advances in cloning technology and successful cloning experiments in animals raised concerns about the possibility of human cloning in recent years. Despite many objections, this is not only a possibility but also a reality. Human cloning is a scientific revolution. However, it also introduces the potential for physical and psychosocial harm to human beings. From this point of view, it raises profound ethical, social and health related concerns. Human cloning would have an impact on the practice of nursing because it could result in the creation of new physiological and psychosocial conditions that would require nursing care. The nursing profession must therefore evaluate the ethics of human cloning, in particular the potential role of nurses. This article reviews the ethical considerations of reproductive human cloning, discusses the main reasons for concern, and reflects a nursing perspective regarding this issue.
Curricular priorities for business ethics in medical practice and research: recommendations from Delphi consensus panels.
DuBois, James M; Kraus, Elena M; Gursahani, Kamal; Mikulec, Anthony; Bakanas, Erin
No published curricula in the area of medical business ethics exist. This is surprising given that physicians wrestle daily with business decisions and that professional associations, the Institute of Medicine, Health and Human Services, Congress, and industry have issued related guidelines over the past 5 years. To fill this gap, the authors aimed (1) to identify the full range of medical business ethics topics that experts consider important to teach, and (2) to establish curricular priorities through expert consensus. In spring 2012, the authors conducted an online Delphi survey with two heterogeneous panels of experts recruited in the United States. One panel focused on business ethics in medical practice (n = 14), and 1 focused on business ethics in medical research (n = 12). Panel 1 generated an initial list of 14 major topics related to business ethics in medical practice, and subsequently rated 6 topics as very important or essential to teach. Panel 2 generated an initial list of 10 major topics related to business ethics in medical research, and subsequently rated 5 as very important or essential. In both domains, the panel strongly recommended addressing problems that conflicts of interest can cause, legal guidelines, and the goals or ideals of the profession. The Bander Center for Medical Business Ethics at Saint Louis University will use the results of the Delphi panel to develop online curricular resources for each of the highest rated topics.
Screening for depression in medical research: ethical challenges and recommendations
Sheehan Aisling M; McGee Hannah
Abstract Background Due to the important role of depression in major illnesses, screening measures for depression are commonly used in medical research. The protocol for managing participants with positive screens is unclear and raises ethical concerns. The aim of this article is to identify and critically discuss the ethical issues that arise when a positive screen for depression is detected, and offer some guidance on managing these issues. Discussion Deciding on whether to report positive ...
Pacific Health Research Guidelines: The Cartography of an Ethical Relationship
Mila-Schaaf, Karlo
In 2004 the Health Research Council of New Zealand (HRC) published a set of "Guidelines on Pacific health research". The Guidelines were an attempt to articulate the features of ethical research relationships with Pacific peoples living in Aotearoa New Zealand. This article describes the process of developing these guidelines, using…
Ethical Considerations for Educational Research in a Virtual World
Girvan, C.; Savage, T.
The combination of features in virtual worlds provides an opportunity to implement and research unique learning experiences. With increasing interest and activity from the educational research community, exploring virtual worlds for teaching and learning, there is a need to identify and understand the ethical implications of conducting research in…
Research as Therapy, Therapy as Research: Ethical Dilemmas in New-Paradigm Research.
Hart, Nicola; Crawford-Wright, Anne
Explores the ethical dilemmas raised by changes in research paradigms that encourage the development of a relationship between researcher and participant. In such contexts it becomes increasingly difficult to distinguish between a therapeutic relationship and a research interview. (Author/GCP)
Ethical Considerations for Teacher-Education Researchers of Coteaching
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Stephen M. Ritchie
Full Text Available In small-scale studies of coteaching, there are few genuine ethical dilemmas for researchers providing participants are engaged in ongoing dialogue about the purposes and emerging results of the research. When studies are up-scaled for teacher education programs, the territory is uncharted. This adds uncertainty about the ethical codes of practice for a teacher education program director who initiates such research. If the research is likely to lead to valued learning experiences for participating interns without harm to other participants, it may be ethical to proceed. In this paper I suggest that even though getting the balance right will continue to challenge researchers, it will be essential to establish and maintain dialogue between all participants. URN: urn:nbn:de:0114-fqs0604218
Ethical aspects of registry-based research in the Nordic countries
National Research Council Canada - National Science Library
Ludvigsson, Jonas F; Håberg, Siri E; Knudsen, Gun Peggy; Lafolie, Pierre; Zoega, Helga; Sarkkola, Catharina; von Kraemer, Stephanie; Weiderpass, Elisabete; Nørgaard, Mette
... is needed to obtain an approval. In this paper, we review ethical aspects of registry-based research, the legal framework, the role of ethics review boards in the Nordic countries, and the structure of the ethics application...
Case It or Else! Fostering Ethical Awareness about Human Genetics.
Lundeberg, Mary; Mogen, Kim; Bergland, Mark; Klyczek, Karen; Johnson, Doug; MacDonald, Eric
Uses the case study approach to introduce students to the relationship between science and society. Develops an awareness of ethics, specifically on DNA research, through computer simulations and Internet conferencing. (Contains 20 references.) (YDS)
Improving the Quality of Host Country Ethical Oversight of International Research: The Use of a Collaborative 'Pre-Review' Mechanism for a Study of Fexinidazole for Human African Trypanosomiasis.
Coleman, Carl H; Ardiot, Chantal; Blesson, Séverine; Bonnin, Yves; Bompart, Francois; Colonna, Pierre; Dhai, Ames; Ecuru, Julius; Edielu, Andrew; Hervé, Christian; Hirsch, François; Kouyaté, Bocar; Mamzer-Bruneel, Marie-France; Maoundé, Dionko; Martinent, Eric; Ntsiba, Honoré; Pelé, Gérard; Quéva, Gilles; Reinmund, Marie-Christine; Sarr, Samba Cor; Sepou, Abdoulaye; Tarral, Antoine; Tetimian, Djetodjide; Valverde, Olaf; Van Nieuwenhove, Simon; Strub-Wourgaft, Nathalie
Developing countries face numerous barriers to conducting effective and efficient ethics reviews of international collaborative research. In addition to potentially overlooking important scientific and ethical considerations, inadequate or insufficiently trained ethics committees may insist on unwarranted changes to protocols that can impair a study's scientific or ethical validity. Moreover, poorly functioning review systems can impose substantial delays on the commencement of research, which needlessly undermine the development of new interventions for urgent medical needs. In response to these concerns, the Drugs for Neglected Diseases Initiative (DNDi), an independent nonprofit organization founded by a coalition of public sector and international organizations, developed a mechanism to facilitate more effective and efficient host country ethics review for a study of the use of fexinidazole for the treatment of late stage African Trypanosomiasis (HAT). The project involved the implementation of a novel 'pre-review' process of ethical oversight, conducted by an ad hoc committee of ethics committee representatives from African and European countries, in collaboration with internationally recognized scientific experts. This article examines the process and outcomes of this collaborative process. © 2014 The Authors. Developing World Bioethics published by John Wiley & Sons Ltd.
Reporting of ethical review of clinical research submitted to the Journal of the American Academy of Dermatology.
Perkins, Alexis C; Choi, Joanna Mimi; Kimball, Alexa B
In recent years there has been an increasing focus on human subject protection and on documentation of ethical review in published clinical research. The JAAD clearly states in its instructions to authors, which adhere to the guidelines set forth by the International Committee of Medical Journal Editors, "studies involving live human subjects must have been approved by the author's Institutional Review Board or its equivalent." To determine what proportion of prospective studies on human subjects submitted to the clinical trials and therapeutics section lacked mention of review by an ethics board and to determine the outcome of these manuscripts. We reviewed 150 prospective studies submitted from July 1, 2004 to January 16, 2006 to a single associate editor, who receives the majority of reports requiring ethics board review. Of 150 prospective studies, 36% (n = 54) had no mention of ethics review or consent, whereas 15% (n = 22) mentioned consent but not ethics review. Forty-two papers were returned asking for ethics information, and of these, 48% were resubmitted with confirmation of ethics review, 22% were withdrawn, 12% were never resubmitted, 12% responded that ethical review was not obtained, and 7% were clarified as exempt from review. Of the 150 papers, 45% were from US authors and 55% were from international authors. Sixty-seven percent of US papers and 35% of international papers included ethics board information (P
The ethics of human genetic intervention: a postmodern perspective.
Dyer, A R
Gene therapy for a particular disease like Parkinson's involves ethical principles worked out for other diseases. The major ethical issues for gene therapy (and the corresponding ethical principles) are safety (nonmalfeasance), efficacy (beneficence), informed consent (autonomy), and allocation of resources (justice). Yet genetic engineering (germ-line interventions or interventions to enhance human potentialities) raises emotions and fears that might cause resistance to gene therapies. Looking at these technologies in a postmodern perspective helps one to appreciate the issues at stake in social and cultural change with a new technology such as gene therapy. While "modern" technology and ethics have focused on the autonomy of the individual, we are beginning to see a lessening of such emphasis on individualism and autonomy and more emphasis on the health of the population. Such a social change could cause technologies about which society may currently be cautious (such as human genetic interventions) to become more acceptable or even expected.
Ethical Issues in Social Media Research for Public Health.
Hunter, Ruth F; Gough, Aisling; O'Kane, Niamh; McKeown, Gary; Fitzpatrick, Aine; Walker, Tom; McKinley, Michelle; Lee, Mandy; Kee, Frank
Social media (SM) offer huge potential for public health research, serving as a vehicle for surveillance, delivery of health interventions, recruitment to trials, collection of data, and dissemination. However, the networked nature of the data means they are riddled with ethical challenges, and no clear consensus has emerged as to the ethical handling of such data. This article outlines the key ethical concerns for public health researchers using SM and discusses how these concerns might best be addressed. Key issues discussed include privacy; anonymity and confidentiality; authenticity; the rapidly changing SM environment; informed consent; recruitment, voluntary participation, and sampling; minimizing harm; and data security and management. Despite the obvious need, producing a set of prescriptive guidelines for researchers using SM is difficult because the field is evolving quickly. What is clear, however, is that the ethical issues connected to SM-related public health research are also growing. Most importantly, public health researchers must work within the ethical principles set out by the Declaration of Helsinki that protect individual users first and foremost.
Scientists' Ethical Obligations and Social Responsibility for Nanotechnology Research.
Corley, Elizabeth A; Kim, Youngjae; Scheufele, Dietram A
Scientists' sense of social responsibility is particularly relevant for emerging technologies. Since a regulatory vacuum can sometimes occur in the early stages of these technologies, individual scientists' social responsibility might be one of the most significant checks on the risks and negative consequences of this scientific research. In this article, we analyze data from a 2011 mail survey of leading U.S. nanoscientists to explore their perceptions the regarding social and ethical responsibilities for their nanotechnology research. Our analyses show that leading U.S. nanoscientists express a moderate level of social responsibility about their research. Yet, they have a strong sense of ethical obligation to protect laboratory workers (in both universities and industry) from unhealthy exposure to nanomaterials. We also find that there are significant differences in scientists' sense of social and ethical responsibility depending on their demographic characteristics, job affiliation, attention to media content, risk perceptions and benefit perceptions. We conclude with some implications for future research.
Human Cognitive Enhancement Ethical Implications for Airman-Machine Teaming
be entirely willing to make use of them."39 Acknowledging concerns exist, it is important to evaluate and assess the ethical implications and...AIR WAR COLLEGE AIR UNIVERSITY HUMAN COGNITIVE ENHANCEMENT ETHICAL IMPLICATIONS FOR AIRMAN-MACHINE TEAMING by William M. Curlin...with the Defense Contract Management Agency at Northrop Grumman, Linthicum, Maryland. He holds a Bachelor and Master degrees in business and is a
Construction of ethics in clinical research: clinical trials registration
Directory of Open Access Journals (Sweden)
C. A. Caramori
Full Text Available Scientific development that has been achieved through decades finds in clinical research a great possibility of translating findings to human health application. Evidence given by clinical trials allows everyone to have access to the best health services. However, the millionaire world of pharmaceutical industries has stained clinical research with doubt and improbability. Study results (fruits of controlled clinical trials and scientific publications (selective, manipulated and with wrong conclusions led to an inappropriate clinical practice, favoring the involved economic aspect. In 2005, the International Committee of Medical Journal Editors (ICMJE, supported by the World Association of Medical Editors, started demanding as a requisite for publication that all clinical trials be registered at the database ClinicalTrials.gov. In 2006, the World Health Organization (WHO created the International Clinical Trial Registry Platform (ICTRP, which gathers several registry centers from all over the world, and required that all researchers and pharmaceutical industries register clinical trials. Such obligatory registration has progressed and will extend to all scientific journals indexed in all worldwide databases. Registration of clinical trials means another step of clinical research towards transparency, ethics and impartiality, resulting in real evidence to the forthcoming changes in clinical practice as well as in the health situation.
Basic Science Research and the Protection of Human Research Participants
Eiseman, Elisa
Technological advances in basic biological research have been instrumental in recent biomedical discoveries, such as in the understanding and treatment of cancer, HIV/AIDS, and heart disease. However, many of these advances also raise several new ethical challenges. For example, genetic research may pose no physical risk beyond that of obtaining the initial blood sample, yet it can pose significant psychological and economic risks to research participants, such as stigmatization, discrimination in insurance and employment, invasion of privacy, or breach of confidentiality. These harms may occur even when investigators do not directly interact with the person whose DNA they are studying. Moreover, this type of basic research also raises broader questions, such as what is the definition of a human subject, and what kinds of expertise do Institutional Review Boards (IRBs) need to review the increasingly diverse types of research made possible by these advances in technology. The National Bioethics Advisory Commission (NBAC), a presidentially appointed federal advisory committee, has addressed these and other ethical, scientific and policy issues that arise in basic science research involving human participants. Two of its six reports, in particular, have proposed recommendations in this regard. "Research Involving Human Biological Materials: Ethical and Policy Guidance" addresses the basic research use of human tissues, cells and DNA and the protection of human participants in this type of research. In "Ethical and Policy Issues in the Oversight of Human Research" NBAC proposes a definition of research involving human participants that would apply to all scientific disciplines, including physical, biological, and social sciences, as well as the humanities and related professions, such as business and law. Both of these reports make it clear that the protection of research participants is key to conducting ethically sound research. By ensuring that all participants in
THE ETHICS OF SCIENTIFIC RESEARCH (WITH PARTICULAR EMPHASIS ON EXERCISE AND MOVEMENT SCIENCE (English translated version
Directory of Open Access Journals (Sweden)
Luis Fernando Aragón-Vargas
Full Text Available This paper reviews how we arrived at the current state of affairs in the ethical practice of scientific research, discussing some issues that are particularly pertinent to the exercise scientist. The paper focuses on two major areas of ethics in science. The ethical principles for biomedical research involving human subjects are presented and discussed using the three basic principles from the Belmont Report (autonomy, beneficence, and justice as a guide. The ethical presentation and publication of data are discussed as an update or expanded comment on the ten topics covered by Roy Shephard in his Ethics in Exercise Science Research paper from 2002. The manuscript closes with a reflection on personal responsibility and its importance in every scientific endeavor: placing all responsibility for action on those scientists or physicians doing the experiments was not sufficient to prevent all types of human research abuses in the first half of the twentieth century. However, intricate and cumbersome external review and approval procedures generate the perception that the system should be more than enough to ensure good practices, a perception that may dangerously prevent the scientists from assuming their individual responsibility.
Partnering with patients in translational oncology research: ethical approach.
Mamzer, Marie-France; Duchange, Nathalie; Darquy, Sylviane; Marvanne, Patrice; Rambaud, Claude; Marsico, Giovanna; Cerisey, Catherine; Scotté, Florian; Burgun, Anita; Badoual, Cécile; Laurent-Puig, Pierre; Hervé, Christian
The research program CARPEM (cancer research and personalized medicine) brings together the expertise of researchers and hospital-based oncologists to develop translational research in the context of personalized or "precision" medicine for cancer. There is recognition that patient involvement can help to take into account their needs and priorities in the development of this emerging practice but there is currently no consensus about how this can be achieved. In this study, we developed an empirical ethical research action aiming to improve patient representatives' involvement in the development of the translational research program together with health professionals. The aim is to promote common understanding and sharing of knowledge between all parties and to establish a long-term partnership integrating patient's expectations. Two distinct committees were settled in CARPEM: an "Expert Committee", gathering healthcare and research professionals, and a "Patient Committee", gathering patients and patient representatives. A multidisciplinary team trained in medical ethics research ensured communication between the two committees as well as analysis of discussions, minutes and outputs from all stakeholders. The results highlight the efficiency of the transfer of knowledge between interested parties. Patient representatives and professionals were able to identify new ethical challenges and co-elaborate new procedures to gather information and consent forms for adapting to practices and recommendations developed during the process. Moreover, included patient representatives became full partners and participated in the transfer of knowledge to the public via conferences and publications. Empirical ethical research based on a patient-centered approach could help in establishing a fair model for coordination and support actions during cancer research, striking a balance between the regulatory framework, researcher needs and patient expectations. Our approach addresses
Beaulieu, Anne; Estalella, Adolfo
An important feature of e-research is the increased mediation of research practices, which changes not only the objects and tools of research, but also the relation between researcher and object, between researchers, and between researchers and their constituencies and stakeholders. This article
Ethical Review and Reflexivity in Research of Children's Sexuality
Flanagan, Paul
Research in the area of children's sexuality is largely based on observational and retrospective studies. Childhood studies literature increasingly calls upon the inclusion of children's voices, yet with sensitive topics ethical positions often close research possibilities in the territories of children's worlds. Children are perceived as a…
Ethics and Community-Based Participatory Research: Commentary on Minkler
Green, Lawrence W.
The author comments on Meredith Minkler's article, "Ethical Challenges for the "Outside" Researcher in Community-Based Participatory Research," Health Education & Behavior 31(6):684-697, 2004 [see EJ824234]. Specifically, this commentary notes along with Minkler that, in relation to the relatively uncharted territory of Community-Based…
Knowledge about the research and ethics committee at Makerere ...
African Journals Online (AJOL)
research participants, protocol review and monitoring of on going research, and the elements of protocol review that are given more attention include ;scientific design and ethical issues. Overall performance of the REC was ranked as average by respondents. The committee should limit delays in approval and effectively ...
Promoting Ethics and Integrity in Management Academic Research: Retraction Initiative.
Ayodele, Freida Ozavize; Yao, Liu; Haron, Hasnah
In the management academic research, academic advancement, job security, and the securing of research funds at one's university are judged mainly by one's output of publications in high impact journals. With bogus resumes filled with published journal articles, universities and other allied institutions are keen to recruit or sustain the appointment of such academics. This often places undue pressure on aspiring academics and on those already recruited to engage in research misconduct which often leads to research integrity. This structured review focuses on the ethics and integrity of management research through an analysis of retracted articles published from 2005 to 2016. The study employs a structured literature review methodology whereby retracted articles published between 2005 and 2016 in the field of management science were found using Crossref and Google Scholar. The searched articles were then streamlined by selecting articles based on their relevance and content in accordance with the inclusion criteria. Based on the analysed retracted articles, the study shows evidence of ethical misconduct among researchers of management science. Such misconduct includes data falsification, the duplication of submitted articles, plagiarism, data irregularity and incomplete citation practices. Interestingly, the analysed results indicate that the field of knowledge management includes the highest number of retracted articles, with plagiarism constituting the most significant ethical issue. Furthermore, the findings of this study show that ethical misconduct is not restricted to a particular geographic location; it occurs in numerous countries. In turn, avenues of further study on research misconduct in management research are proposed.
Ethical and Professional Norms in Community-Based Research
Campano, Gerald; Ghiso, María Paula; Welch, Bethany J.
In this article Gerald Campano, María Paula Ghiso, and Bethany J. Welch explore the role of ethical and professional norms in community-based research, especially in fostering trust within contexts of cultural diversity, systemic inequity, and power asymmetry. The authors present and describe a set of guidelines for community-based research that…
Ethical issues and challenges in pressure ulcer research - the research nurses' perspective.
Choo, Jimmy; Blundell, Sally; McGinnis, Elizabeth
This paper explores the issues faced by research nurses in pressure ulcer research through reflection on our own practice and subsequently addresses these issues through critical appraisal of the existing literature. A critical reflection framework which provided an opportunity for group reflection and reflexivity was adopted to guide our reflection. Focus questions were formulated based on our reflections and used to inform our literature review. Keywords used in the literature review search included 'research nurse', ethical principles, ethical issues and reflection. A formal tool was used to appraise normative ethics articles. Reflection on our practice in pressure ulcer research identified four main issues: informed consent, confidentiality, methodological uncertainties and more generally the ethical dilemma of the conflict between our accountability and responsibility to the patients and obligations to the research studies. The notion of 'power relations' was found to permeate our practice as research nurses at all level. Six normative ethics papers were retrieved and critically appraised to aid our personal and professional learning and development in the conduct of ethical practice as research nurses in pressure ulcer research through the theory of practice which other research nurses and/or nurse researchers used in other disciplines. Four main ethical challenges and the issue of power relation were highlighted. Our reflection and the appraisal of the literature provided us the necessary knowledge and skills to better navigate these ethical challenges in the future. Copyright © 2012 Tissue Viability Society. Published by Elsevier Ltd. All rights reserved.
Ethics in research: implications for the higher education
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Antonio Bosco de Lima
Full Text Available The ethics as a historical movement is the result of combinations, negotiations, disputes of projects, finally integration between entities with differences and diversities. In recent years, the theme has been recurring in higher education when it comes to the research and its submission to the ethics commissions opinion installed in all territories of Brazil. Here, we question the conception of the ethics, approached from a sociological perspective, describing the motion of the committees in the 2010s and its influence on the guidance on the research, development and dissemination of knowledge. The methodology used was theoretical research, exploring productions in books, journal articles and news published by the printed and digital media, as well as some discussions in academic institutions.
The ethical justification for the use of animals in biomedical research
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Kostomitsopoulos N.G.
Full Text Available Despite all the benefits, the use of animals in biomedical research is still a subject of debate with respect to its true value. The sensitivity of the community and the interest of scientists who work in the field of laboratory animal science and welfare have clearly demonstrated that the use of animals in biomedical research must be conducted under specific scientific, legal and ethical rules. The ethical justification of a research project starts from its initial designing phase until its completion and the review of the obtained results. Justification of the necessity of the project and the need to use animals in the interests of human or animal health, the importance of conducting a pilot study and a systematic review of previously published animal research on the topic, and the availability of the proper facilities, equipment and personnel are the main issues of concern in the ethical review of a research project. The ethical justification of the proposed project by the scientists themselves involves team-work, and should be a sustainable rather than a one-off procedure. This justification reflects the interest and the responsibility of scientists to reduce the number of animals, refine the procedures, and possibly replace animals in their research projects. The end-results of the ethical review process will be the creation of a trust relationship between scientists and society. .
Oncologists' opinions about research ethics committees in Italy: an update, 2004.
Mosconi, Paola; Colombo, Cinzia; Labianca, Roberto; Apolone, Giovanni
While there is general consensus about the basic features of ethical research, the explosion of information from technology, genetics and clinical research, and the desire to accelerate the translation of preliminary findings into clinical research and practice have created space for conflicts between the aims of research, medical ethics and human rights. Research ethics committees (RECs) play a crucial role. In 2004, a short standardized questionnaire was sent to 110 Italian oncologists. The questionnaire explored aspects of the interaction between oncologists and RECs, including reports on personal experience with RECs, and the oncologists' opinions and level of satisfaction with important functions of RECs, such as bureaucratic, ethics, scientific, and educational and training aspects. The findings are compared with those from the previous surveys. Eighty-three out of the 91 oncologists returned the questionnaire. Responders were working in 67 hospitals (60 RECs). The level of satisfaction with REC activities was high for ethical and scientific aspects (87 and 80% were satisfied or very satisfied, respectively); somewhat lower for bureaucratic and secretarial aspects (61%); and much lower for educational and formation activities (33%). Comparison with other surveys does not show any important difference. The main findings of this survey are the stable figures concerning oncologists' opinions and the low ratings given to education and training aspects. This latter finding clearly identifies the need for educational activities, and the possibility of using this approach to foster interactions between RECs and researchers.
Scientific Norms and Ethical Misconduct: Research towards the Design of a Course in Scientific Ethics
Verdan, Andrea M.; Ingallinera, J. Tyler; Bhattacharyya, Gautam
We report our study of chemistry graduate students' beliefs regarding the normative values of their disciplines and their perceptions of the ethical challenges they face as students, teachers, and scientific researchers. Using a phenomenographical lens, we interviewed seven graduate students who had achieved Ph.D. candidacy and at least 3 full…
The ethical and legal regulation of HIV-vaccine research in Africa ...
African Journals Online (AJOL)
Ethical and legal frameworks are important for ensuring that the goals of scientific research are realised while at the same time the rights and welfare of human participants are adequately protected. A balance in attaining these two goals can be achieved if such frameworks provide for legally binding structures and ...
Proposing Ethical Practice Standards for Community-Engaged Research in Health Education
Stellefson, Michael; Paige, Samantha R.; Alber, Julia M.; Barry, Adam E.; James, Delores
"The Belmont Report" was written in 1979 to address the abuse of human participants in biomedical research. In the report, three ethical principles were described: (1) "beneficence," which describes an act of charity or kindness that maximizes possible benefits while minimizing possible harms; (2) "justice," described…
Ethical considerations with regard to the sanctity of human life
African Journals Online (AJOL)
whatever the circumstances. The problem inherent in discussing these core beliefs is that almost all debate is based on the premise that the sanctity of human life is paramount, and that to kill a human being, whether by abortion or euthanasia, is ethically wrong. It is impossible to substantiate this argument rationally, and.
[Ethics, inequality, poverty and human rights in psychiatry].
Pérez De Nucci, Armando M
This article aims to show the existence of important failures in the field of Human Rights and equal possibilities in health. Human rights are analyzed an developed in the field of public and social health in our country. Ethics is the main field proposed to reach solutions in the context on EPEP (Etica para la erradicación de la pobreza).
Resisting the seduction of "ethics creep": using Foucault to surface complexity and contradiction in research ethics review.
Guta, Adrian; Nixon, Stephanie A; Wilson, Michael G
In this paper we examine "ethics creep", a concept developed by Haggerty (2004) to account for the increasing bureaucratization of research ethics boards and institutional review boards (REB/IRBs) and the expanding reach of ethics review. We start with an overview of the recent surge of academic interest in ethics creep and similar arguments about the prohibitive effect of ethics review. We then introduce elements of Michel Foucault's theoretical framework which are used to inform our analysis of empirical data drawn from a multi-phase study exploring the accessibility of community-engaged research within existing ethics review structures in Canada. First, we present how ethics creep emerged both explicitly and implicitly in our data. We then present data that demonstrate how REB/IRBs are experiencing their own form of regulation. Finally, we present data that situate ethics review alongside other trends affecting the academy. Our results show that ethics review is growing in some ways while simultaneously being constrained in others. Drawing on Foucauldian theory we reframe ethics creep as a repressive hypothesis which belies the complexity of the phenomenon it purports to explain. Our discussion complicates ethics creep by proposing an understanding of REB/IRBs that locates them at the intersection of various neoliberal discourses about the role of science, ethics, and knowledge production. Copyright © 2012 Elsevier Ltd. All rights reserved.
Doing accountability: a discourse analysis of research ethics committee letters.
O'Reilly, Michelle; Dixon-Woods, Mary; Angell, Emma; Ashcroft, Richard; Bryman, Alan
Research ethics committees (RECs) are charged with adjudicating the ethical status of research projects, and determining the conditions necessary for such projects to proceed. Both because of their position in the research process and because of the controversial nature of ethical judgements, RECs' views and decisions need to be accountable. In this paper we use techniques of discourse analysis to show how REC decision letters 'do' accountability. Using a sample of 260 letters from three datasets, we identify a range of discursive devices used in letters written by RECs. These include drawing attention to: the process behind the decision, including its collaborative nature; holding the applicants accountable, by implying that any decision made by the REC can be attributed to the performance of the applicants; referring to specialist expertise; and calling upon external authorities. These tactics 'do' accountability by showing that routines of ethical assessment have been enacted, by establishing the factuality of claims, and by managing questions of fault and blame attribution. They may, however, also risk undermining legitimacy by failing to acknowledge the inherent contestability of ethical decision making or the limited nature of the cultural authority accorded to RECs, and thus may appear as an illegitimate exercise of power.
Ethical conduct in intimate partner violence research: challenges and strategies.
Btoush, Rula; Campbell, Jacquelyn C
Intimate partner violence (IPV) research has expanded dramatically in the past 2 decades. However, updated ethical guidelines to protect the safety and autonomy of research participants, study data, and the research team are still lacking in this evolving area of research. This article presents general concepts in research ethics and the specific challenges and strategies for IPV research related to recruitment and retention, maintenance of women's safety, privacy, and confidentiality, and their voluntary participation as well as assessment of benefits and risks, strategies to minimize risk, the Certificates of Confidentiality, and training of the research team. This area of nursing research is critical for developing practice guidelines and improving the health and quality of life of abused women.
Ethical Symmetry in Participatory Research with Infants
Salamon, Andi
Participatory research methods aim to break down the distinction between researchers and the researched. Infants are increasingly being seen as participants in research, but the nature of their participation is being questioned following an increased interest in participatory research with children. This article offers a perspective on…
Ethical Considerations in Tissue Engineering Research: Case Studies in Translation
Baker, Hannah B.; McQuilling, John P.; King, Nancy M. P.
Tissue engineering research is a complex process that requires investigators to focus on the relationship between their research and anticipated gains in both knowledge and treatment improvements. The ethical considerations arising from tissue engineering research are similarly complex when addressing the translational progression from bench to bedside, and investigators in the field of tissue engineering act as moral agents at each step of their research along the translational pathway, from...
Neyda Ibañez; Rubén Castillo
The purpose of the investigation was to interpret training in ethics for action business students an introduction to the economy of the Faculty of Social and Economic Sciences at the University of Carabobo, as part of professional development in business studies. The investigation was addressed within the paradigm post positivist using ethnographic and hermeneutic method, descriptive mode of scientific research and technique participant-observation. It concludes that training in ethics manage...
Introducing Summer High School Student-Researchers to Ethics in Scientific Research
Mabrouk, Patricia Ann
A case based workshop on science ethics for high school students participating in summer research apprenticeships is developed and tested. It is found that this case-based approach is useful in facilitating faculty-student discussions of research ethics with their proteges.
Without 'informed consent'? Ethics and ancient mummy research.
Kaufmann, I M; Rühli, F J
Ethical issues are of foremost importance in modern bio-medical science. Ethical guidelines and socio-cultural public awareness exist for modern samples, whereas for ancient mummy studies both are de facto lacking. This is particularly striking considering the fact that examinations are done without informed consent or that the investigations are invasive due to technological aspects and that it affects personality traits. The aim of this study is to show the pro and contra arguments of ancient mummy research from an ethical point of view with a particular focus on the various stakeholders involved in this research. Relevant stakeholders in addition to the examined individual are, for example, a particular researcher, and the science community in general, likely descendents of the mummy or any future generation. Our broad discussion of the moral dilemma of mummy research should help to extract relevant decision-making criteria for any such study in future. We specifically do not make any recommendations about how to rate these decision-factors, since this is highly dependent on temporal and cultural affiliations of the involved researcher. The sustainability of modern mummy research is dependent on ethical orientation, which can only be given and eventually settled in an interdisciplinary approach such as the one we attempt to present here.
Ethical and Practical Similarities Between Pedagogical and Clinical Research
Directory of Open Access Journals (Sweden)
Rachel L. Robson
Full Text Available Clinical research and educational research face similar practical and ethical constraints that impact the rigor of both kinds of studies. Practical constraints facing undergraduate science education research include small sample sizes (largely a result of disproportionate incentives to conduct educational research at small colleges versus large universities, and the impossibility of randomizing individual students to separate arms of a study. Ethical constraints include gaining the informed consent and assuring the confidentiality of study participants, and the requirement of equipoise (i.e., that it is unethical to subject some study participants to an experimental treatment that researchers have good reason to believe to be inferior to another treatment. While these constraints have long been recognized for clinical research, their implications for educational research have not been fully recognized. Criticism that educational research lacks rigor should be tempered by the recognition that educational research is not parallel to laboratory research, but is parallel to clinical research. These parallels suggest solutions to some of the practical and ethical difficulties faced by educational researchers, as well.
Ethical, legal, and social implications of biobanks for genetics research.
Haga, Susanne B; Beskow, Laura M
The elucidation of the causes of complex diseases pivots on understanding the interaction between biological (genetic) and environmental factors that give rise to disease risk. The modest effects of genetic factors in complex diseases supports the need for large-scale studies of high-quality human biological materials, paired with detailed clinical data, to adequately detect these effects. To this end, biobanks or biorepositories have been developed around the world, by public and private entities alike, to provide researchers the opportunity to study collections of human biospecimens annotated with clinical and other health-related measurements. It has been estimated that more than 270 million tissue samples are stored in the U.S., expanding at a rate of approximately 20 million samples annually. In this chapter, we discuss several ethical, legal, and social issues that have been raised surrounding biobanks, including recruitment of vulnerable populations, informed consent, data disclosure to participants, intellectual property, and privacy and security. Throughout the chapter, we will highlight experiences of national biobanks in Iceland, the U.K., Sweden, and Estonia, and the proposal for a U.S. population cohort study. The dependence on public participation requires clear and transparent policies developed through inclusive processes.
Ethics and human rights issues experienced by nurses in leadership roles.
Redman, Barbara A; Fry, Sara T
The aims of this study were to identify (1) the ethics and human rights issues experienced by nurses in leadership roles (NLs); (2) how frequently these issue occurred in the NLs'practices; and (3) how disturbed the NLs were by the issues. Dillman's Total Design Method (1978) for mailed surveys guided the study design. Data analysis was performed on 470 questionnaires from New England RNs in nursing leadership roles. The most frequently experienced ethics and human rights issues during the previous 12 months were (1) protecting patient right and human dignity; (2) respecting or not respecting informed consent to treatment; (3) use or nonuse of physical or chemical restraints; (4) providing care with possible risks to the RN's health; (5) following or not following advance directives; and (6) staffing patterns that limit patient access to nursing care. The most disturbing ethics and human rights issues experienced by the NLs were staffing patterns that limited patient access to nursing care, prolonging the dying process with inappropriate measures, working with unethical, incompetent, or impaired colleagues, implementing managed care policies that threaten quality of care, not considering quality of the patient's life, and caring for patients and families who are uninformed or misinformed about treatment, prognosis, or medical alternatives. Nearly 39% of the NLs reported experiencing ethics and human rights issues one to four times a week or more, and more than 90% handled their most recent ethics issue by discussing it with nursing peers. Study findings have implications for ethics education and resource support for nurses in leadership roles, and for further research on how NLs handle ethics and human rights issues in the workplace.
The ethics of research into schizophrenia prevention: a carer's perspective.
Peterson, D R
To outline from a carer's/family's perspective the ethical concerns raised by research into screening for factors in people at risk of schizophrenia. The need for families and carers of people with schizophrenia to seek a voice in the ethics of research into schizophrenia prevention is described. The possibility that societal myths, literature and language have created sustained ignorance about psychotic illnesses, resulting in fear and/or prejudice, is considered. The impact of these factors greatly exacerbating the burden of schizophrenia for sufferers and their families is discussed. There is evidence that people with schizophrenia share the disadvantages of other disempowered minorities. It is necessary for ethical constraints to be cognisant of this; research should include critically exploring reasons for attempting to eliminate the condition. Development of an ethical framework for prevention research into schizophrenia should include carer/family input. From a carer/family perspective, research into schizophrenia should be directed at ameliorating the effects of the illness by advancing methods of early diagnosis and by finding suitable treatments that do not carry punitive side-effects, thus allowing people with the illness to reach their potential in all aspects of their lives. Therapeutic relief combined with the elimination of social ostracism would greatly benefit people with schizophrenia and their families.
[Ethical and social issues on the human genome analysis].
Archer, L
The modern technologies for human genome analysis raise a variety of ethical and social questions. The pre-symptomatic diagnostic of diseases of late expression is becoming possible for a rapidly increasing number of situations. The use of that knowledge by employers, insurance companies, schools, and society in general, could lead to discriminations and stigmatizations, in addition to adverse psychological reactions. DNA fingerprinting raises questions of privacy and personal autonomy in its applications to paternity proof, criminal proceedings, and establishment of data banks. The project of the immediate and complete sequencing of the human genome will lead to questions of economical ethics, as well as of access, commercialization and property rights of scientific information and materials obtained. It also favours a reducionistic mentality and international unbalances. The molecular biology of humans, which will follow the complete sequencing of the genome, may foster a rethinking of the concepts of freedom of self-determination (basic for moral responsibility) and of equality. The gene therapy and its possible extension to the betterment of the human species, pose questions of ethical limits to this technology. All these problems will have to be answered in terms of the application of the principle of ethical freedom for self-fulfillment, as a right of the human person, as well as of science and society. Scientific, economic and social interests have to be subordinated to the dignity of the human person.
Ethics of social and behavioural research in cancer.
Jegede, A S
Unlike biomedical research, social and behavioural research has not been thought to require rigorous or mandatory ethical review on the assumption that it can do no harm. As a result, little or no attention is paid to its involvement in health researches. This paper discusses the ethical challenges of social and behavioural research in cancer to identify potential areas for research. Inferences were made from documentary analysis of characteristics of cancer patients. A total of 76 papers were reviewed covering the period from1960 to 2007. The data shows that conducting social and behavioural research on cancer patients in Africa is associated with ethical challenges. These include; respect for person and autonomy, risk minimization, exploitation, inducement and compensation, benefit sharing, gaining access to participant, third party issue, informed consent, coercion, discrimination, conflict of interest and scientific misconduct. The paper concludes that cultural challenges of cancer research, management and administration of informed consent, access to research participant, compensation of research participant and benefit sharing are major potential areas of research.
Safeguarding children's rights in psychopharmacological research: ethical and legal issues.
Kölch, Michael; Ludolph, Andrea G; Plener, Paul L; Fangerau, Heiner; Vitiello, Benedetto; Fegert, Joerg M
Research on psychopharmacological treatment in children and adolescents is the subject of ongoing ethical discussion, as minors with mental disorders constitute a vulnerable patient group. Considering the important legislative changes in pediatric research over the past decade in both the US and Western Europe, there is a need to review recent developments in this area. Based on a systematic literature review, a hermeneutical analysis focusing the main issues of ethics in child and adolescent psychopharmacology is provided. Legal and regulatory aspects of psychopharmacological research in children are compared between the US and Europe. Relevant issues were informed assent and consent to research participation, minimal risk and burden of research, ethics of pharmacogenetics, research on "me-too" medications, and justice in global research. Additionally, the concern about undue influence of financial interests in research is also addressed. Incentives for the conduct of clinical trials with children comparable to those contained in US legislation are now provided in the EU. Research to develop "me-too" preparations may have no significant benefit for children, but can cause research burden and detract from clinically more important projects by utilizing limited investigator time and patient resources. Thus far, pharmacogenetic studies may bring more individualized treatment approaches into child psychiatry but they remain at present a promise for the future. Finally, the issues of avoiding undue influence from funders and conflicts of interest remain a prominent concern which can be solved by declaring conflicts and publishing all results of studies extensively.
Research Ethics in Teaching and Learning
Doyle, Elaine; Buckley, Patrick
The evolution of enquiry-based teaching and learning has broadened the range of research carried out by university students. As a result, the boundaries between teaching and learning and academic research are being blurred to a degree not experienced heretofore. This paper examines whether research undertaken as part of course work should fall…
Ethical Issues in Radiology Journalism, Peer Review, and Research.
Katz, Douglas S; Gardner, James B; Hoffmann, Jason C; Patlas, Michael N; Bhargava, Puneet; Moshiri, Mariam; Remer, Erick M; Gould, Elaine S; Smith, Stacy
Although some research and publication practices are clearly unethical, including fraud and plagiarism, other areas of research and publication, such as informed consent and conflicts of interest, fall into grayer areas. The purposes of this article are, therefore, to review a variety of relevant ethical issues in radiology-related journalism, peer review, and research; to review the radiology literature to date that has addressed these issues; and to present position statements and potential solutions to these problems.
Anatomy research under the knife of medical ethics.
Johnson, W M S; Archana, R; Prathibha, K M; Johnson, Priscilla
There is increased awareness and anxiety in conducting research for publication and at the same time ignorance about getting Ethical Committee clearance at least in Anatomy Departments among Basic Medical Sciences. While people are actively presenting papers, collect data, Indian Council for Medical Research guidelines does not cover aspects pertaining to Anatomy oriented research activities. This review article is an eye opener for fraternity in the medical field, especially in anatomy.
Anatomy research under the knife of medical ethics
Directory of Open Access Journals (Sweden)
W. M. S. Johnson
Full Text Available There is increased awareness and anxiety in conducting research for publication and at the same time ignorance about getting Ethical Committee clearance at least in Anatomy Departments among Basic Medical Sciences. While people are actively presenting papers, collect data, Indian Council for Medical Research guidelines does not cover aspects pertaining to Anatomy oriented research activities. This review article is an eye opener for fraternity in the medical field, especially in anatomy.
Nursing informatics, ethics and decisions: implications for translational research
Kaltoft, Mette Kjer; Nielsen, Jesper Bo; Dowie, Jack
Nursing informatics, ethics and decisions: implications for translational research Objective: To introduce, in the multi-disciplinary contexts of clinical decision making and policy formation, a theory-based decision-analytic framework for the transparent forward translation of research into practice which can simultaneously identify and communicate the needs for backward translation from practice to research.Method:Web-based decision analytic software is used to demonstrate how the weights f...
Radenko Maric; Jelena Vemic- Djurkovic
In this paper the importance of practice of human resource management as of a significant driver of business ethics in companies has been considered. The basic premise of the paper is the fact that the company's main source of unethical behaviour is situated in its people's activities which further implies that many measures aimed to apply and improve business ethics belong to the domain of human resource management. Based on research results on a sample of 36 enterprises, the paper attempts...
Co-Evolution: Law and Institutions in International Ethics Research
Millar-Schijf, Carla C.J.M.; Cheng, Philip Y.K.; Choi, Chong-Ju
Despite the importance of the co-evolution approach in various branches of research, such as strategy, organisation theory, complexity, population ecology, technology and innovation (Lewin et al., 1999; March, 1991), co-evolution has been relatively neglected in international business and ethics
Journal Editing and Ethical Research Practice: Perspectives of Journal Editors
Randell-Moon, Holly; Anderson, Nicole; Bretag, Tracey; Burke, Anthony; Grieshaber, Sue; Lambert, Anthony; Saltmarsh, David; Yelland, Nicola
This article offers perspectives from academics with recent journal editing experience on a range of ethical issues and dilemmas that regularly pose challenges for those in editorial roles. Each contributing author has provided commentary and reflection on a select topic that was identified in the research literature concerning academic publishing…
A Qualitative Research on Administration Ethics at School
Güngör, Semra Kiranli; Özkara, Funda
The aim of the research is to reveal the opinions of the school administrators about the administration ethics. In this study, 30 administrators working in the middle schools of Eskisehir province center in the 2016-2017 academic year were reached. In the study, data were gathered by interview technique which is one of the qualitative research…
State-of-the-Art Report on Ethics of Research Integrity
Energy Technology Data Exchange (ETDEWEB)
Kwon, Hyuk; Hahn, K. W.; Nam, Y. M.; You, B. H.; Min, B. J
The report briefly considers the generous ethical issues such as the background of philosophy, the issues of research ethics, the research integrity, the role of citation, the program and the code of research ethics. The report introduces the background of philosophy of science and elements of research ethics. It also considers the precedents of misconduct in research ethics and the ingredients to preserve the research integrity. Especially, the citation with obscure boundary between proper citation and plagiarism is carefully explored through several examples. Finally, the domestic ethics conditions are investigated on the research integrity and educational program on the responsible conduct of research. To compare the domestic situation, the educational program and the system of research integrity in EU and USA are deeply searched in Ch. 6 and Appendix III and V. To develop an educational program of research ethics and integrity, Nuclear Training Centre(NTC) collects and arranges the material and resource for research ethics.
Ethics of drug research in the pediatric intensive care unit.
Kleiber, Niina; Tromp, Krista; Mooij, Miriam G; van de Vathorst, Suzanne; Tibboel, Dick; de Wildt, Saskia N
Critical illness and treatment modalities change pharmacokinetics and pharmacodynamics of medications used in critically ill children, in addition to age-related changes in drug disposition and effect. Hence, to ensure effective and safe drug therapy, research in this population is urgently needed. However, conducting research in the vulnerable population of the pediatric intensive care unit (PICU) presents with ethical challenges. This article addresses the main ethical issues specific to drug research in these critically ill children and proposes several solutions. The extraordinary environment of the PICU raises specific challenges to the design and conduct of research. The need for proxy consent of parents (or legal guardians) and the stress-inducing physical environment may threaten informed consent. The informed consent process is challenging because emergency research reduces or even eliminates the time to seek consent. Moreover, parental anxiety may impede adequate understanding and generate misconceptions. Alternative forms of consent have been developed taking into account the unpredictable reality of the acute critical care environment. As with any research in children, the burden and risk should be minimized. Recent developments in sample collection and analysis as well as pharmacokinetic analysis should be considered in the design of studies. Despite the difficulties inherent to drug research in critically ill children, methods are available to conduct ethically sound research resulting in relevant and generalizable data. This should motivate the PICU community to commit to drug research to ultimately provide the right drug at the right dose for every individual child.
Humanity in Digital Age: Cognitive, Social, Emotional, and Ethical Implications
Yamamoto, Junko; Ananou, Simeon
Even though technology has brought great benefits to current society, there are also indications that the manner in which people use technology has undermined their humanity in some respects. In this article the authors frame human nature in terms of four dimensions: cognition, social interaction, emotion, and ethics. We argue that while basic human nature remains constant, the four dimensions are molded to some extent by interaction with our environment, particularly through the use of techn...
Human Dignity and the Medical Ethics in Slovakia
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Vasil Gluchman
qualities of someone or something that deserve esteem and respect. However, what is human dignity of doctors, nurses and patients? Is it a primary value of all human beings without differences in their social status or it depends on abilities of moral agents (including doctors, nurses and patients? How is kept human dignity of doctors, nurses, health care workers and patients by ethical codes of medical professions in Slovakia at all?
The treatment of sex offenders: evidence, ethics, and human rights.
Birgden, Astrid; Cucolo, Heather
Public policy is necessarily a political process with the law and order issue high on the political agenda. Consequently, working with sex offenders is fraught with legal and ethical minefields, including the mandate that community protection automatically outweighs offender rights. In addressing community protection, contemporary sex offender treatment is based on management rather than rehabilitation. We argue that treatment-as-management violates offender rights because it is ineffective and unethical. The suggested alternative is to deliver treatment-as-rehabilitation underpinned by international human rights law and universal professional ethics. An effective and ethical community-offender balance is more likely when sex offenders are treated with respect and dignity that, as human beings, they have a right to claim.
Knowledge of the Nigerian Code of Health Research Ethics Among Biomedical Researchers in Southern Nigeria.
Ogunrin, Olubunmi A; Daniel, Folasade; Ansa, Victor
Responsibility for protection of research participants from harm and exploitation rests on Research Ethics Committees and principal investigators. The Nigerian National Code of Health Research Ethics defines responsibilities of stakeholders in research so its knowledge among researchers will likely aid ethical conduct of research. The levels of awareness and knowledge of the Code among biomedical researchers in southern Nigerian research institutions was assessed. Four institutions were selected using a stratified random sampling technique. Research participants were selected by purposive sampling and completed a pre-tested structured questionnaire. A total of 102 biomedical researchers completed the questionnaires. Thirty percent of the participants were aware of the National Code though 64% had attended at least one training seminar in research ethics. Twenty-five percent had a fairly acceptable knowledge (scores 50%-74%) and 10% had excellent knowledge of the code (score ≥75%). Ninety-five percent expressed intentions to learn more about the National Code and agreed that it is highly relevant to the ethical conduct of research. Awareness and knowledge of the Code were found to be very limited among biomedical researchers in southern Nigeria. There is need to improve awareness and knowledge through ethics seminars and training. Use of existing Nigeria-specific online training resources is also encouraged.
Ethics and Emotions: A Migrant Researcher Doing Research Among Romanian Migrants
Oana Romocea
This article explores both the ethical and emotional issues that emerge while conducting qualitative research as a Romanian migrant researcher among Romanian migrants settled in the UK. I specifically look at the transformative role played by emotions in the research process and how knowledge is generated by a permanent state of 'objective reflexivity' employed by the researcher and self-reflexivity on the part of the participants. While most emotions and ethical considerations transpire ...
Researching with Families: Ethical Issues and Situations
Dockett, Sue; Perry, Bob; Kearney, Emma; Hampshire, Anne; Mason, Jan; Schmied, Virginia
This article draws on an Australian project engaging with families with complex support needs as their children start school. The project itself is focused on developing collaborative research relationships between families, community support agencies and researchers with the aim of investigating what happens for families during the transition to…
The ethical dilemma of embryonic stem cell research.
Manzar, Nabeel; Manzar, Bushra; Hussain, Nuzhat; Hussain, M Fawwad Ahmed; Raza, Sajjad
To determine the knowledge, attitude, and ethical concerns of medical students and graduates with regard to Embryonic Stem Cell (ESC) research. This questionnaire based descriptive study was conducted at the Civil Hospital Karachi (CHK), Pakistan from February to July 2008. A well structured questionnaire was administered to medical students and graduate doctors, which included their demographic profile as well as questions in line with the study objective. Informed consent was taken and full confidentiality was assured to the participants. Data were entered in a Statistical Package for Social Sciences (SPSS version.12) and analyzed. A total of 204 male and 216 female medical students and doctors were administered questionnaires out of which 105 males (51.4%) and 108 females (50%) were aware of the embryonic stem cell research and its ethical implications. Forty percent males and 47% of females were of the opinion that life begins at conception. Forty-six percent males and 39% females were in favor of stem cell research while only 31% males and 28% females supported the ESC research. Less than 1/3 of students supported using frozen embryos for research purposes while more than 2/3 indicated that they were unlikely to support abortion for stem cell research purposes. The majority of the students were in favor of stem cell research with some reservations regarding ESC research. A sizeable number of students withheld their views, reflecting their poor understanding of medical ethics. The result of the study indicates a need for incorporating bioethics into the medical curriculum.
Education of research ethics for clinical investigators with Moodle tool.
Halkoaho, Arja; Matveinen, Mari; Leinonen, Ville; Luoto, Kirsi; Keränen, Tapani
In clinical research scientific, legal as well as ethical aspects are important. It is well known that clinical investigators at university hospitals have to undertake their PhD-studies alongside their daily work and reconciling work and study can be challenging. The aim of this project was to create a web based course in clinical research bioethics (5 credits) and to examine whether the method is suitable for teaching bioethics. The course comprised of six modules: an initial examination (to assess knowledge in bioethics), information on research legislation, obtaining permissions from authorities, writing an essay on research ethics, preparing one's own study protocol, and a final exam. All assignments were designed with an idea of supporting students to reflect on their learning with their own research. 57 PhD-students (medical, nursing and dental sciences) enrolled and 46 completed the course. Course evaluation was done using a questionnaire. The response rate was 78%. Data were analyzed using quantitative methods and qualitative content analysis. The course was viewed as useful and technically easy to perform. Students were pleased with the guidance offered. Personal feedback from teachers about students' own performance was seen advantageous and helped them to appreciate how these aspects could be applied their own studies. The course was also considered valuable for future research projects. Ethical issues and legislation of clinical research can be understood more easily when students can reflect the principles upon their own research project. Web based teaching environment is a feasible learning method for clinical investigators.
The Challenge of Timely, Responsive and Rigorous Ethics Review of Disaster Research: Views of Research Ethics Committee Members.
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Matthew Hunt
Full Text Available Research conducted following natural disasters such as earthquakes, floods or hurricanes is crucial for improving relief interventions. Such research, however, poses ethical, methodological and logistical challenges for researchers. Oversight of disaster research also poses challenges for research ethics committees (RECs, in part due to the rapid turnaround needed to initiate research after a disaster. Currently, there is limited knowledge available about how RECs respond to and appraise disaster research. To address this knowledge gap, we investigated the experiences of REC members who had reviewed disaster research conducted in low- or middle-income countries.We used interpretive description methodology and conducted in-depth interviews with 15 respondents. Respondents were chairs, members, advisors, or coordinators from 13 RECs, including RECs affiliated with universities, governments, international organizations, a for-profit REC, and an ad hoc committee established during a disaster. Interviews were analyzed inductively using constant comparative techniques.Through this process, three elements were identified as characterizing effective and high-quality review: timeliness, responsiveness and rigorousness. To ensure timeliness, many RECs rely on adaptations of review procedures for urgent protocols. Respondents emphasized that responsive review requires awareness of and sensitivity to the particularities of disaster settings and disaster research. Rigorous review was linked with providing careful assessment of ethical considerations related to the research, as well as ensuring independence of the review process.Both the frequency of disasters and the conduct of disaster research are on the rise. Ensuring effective and high quality review of disaster research is crucial, yet challenges, including time pressures for urgent protocols, exist for achieving this goal. Adapting standard REC procedures may be necessary. However, steps should be
The ethics of human-robot relationships
de Graaf, M.M.A.
Currently, human-robot interactions are constructed according to the rules of human-human interactions inviting users to interact socially with robots. Is there something morally wrong with deceiving humans into thinking they can foster meaningful interactions with a technological object? Or is this
An Evaluation of Research Ethics in Undergraduate Health Science Research Methodology Programs at a South African University.
Coetzee, Tanya; Hoffmann, Willem A; de Roubaix, Malcolm
The amended research ethics policy at a South African University required the ethics review of undergraduate research projects, prompting the need to explore the content and teaching approach of research ethics education in health science undergraduate programs. Two qualitative data collection strategies were used: document analysis (syllabi and study guides) and semi-structured interviews with research methodology coordinators. Five main themes emerged: (a) timing of research ethics courses, (b) research ethics course content, (c) sub-optimal use of creative classroom activities to facilitate research ethics lectures, (d) understanding the need for undergraduate project research ethics review, and (e) research ethics capacity training for research methodology lecturers and undergraduate project supervisors. © The Author(s) 2015.
Ethical Research Practices across Disciplinary Boundaries: The Process of Research Involving Children with a Visual Impairment
Gray, Colette; Carville, Sheelagh
Despite the plethora of papers reporting evidence from studies examining aspects of child development, there was until quite recently a dearth of literature on the ethical implications of research involving children and vulnerable groups. To inform the debate, this paper begins by drawing a distinction between ethical and methodological approaches…
An evaluation of a data linkage training workshop for research ethics committees.
Tan, Kate M; Flack, Felicity S; Bear, Natasha L; Allen, Judy A
In Australia research projects proposing the use of linked data require approval by a Human Research Ethics Committee (HREC). A sound evaluation of the ethical issues involved requires understanding of the basic mechanics of data linkage, the associated benefits and risks, and the legal context in which it occurs. The rapidly increasing number of research projects utilising linked data in Australia has led to an urgent need for enhanced capacity of HRECs to review research applications involving this emerging research methodology. The training described in this article was designed to respond to an identified need among the data linkage units in the Australian Population Health Research Network (PHRN) and HREC members in Australia. Five one-day face to face workshops were delivered in the study period to a total of 98 participants. Participants in the workshops represented all six categories of HREC membership composition listed in the National Health and Medical Research Centres' (NHMRC) National Statement on Ethical Conduct in Human Research. Participants were assessed at three time points, prior to the training (T1), immediately after the training (T2) and 8 to 17 months after the training (T3). Ninety participants completed the pre and post questionnaires; 58 of them completed the deferred questionnaire. Participants reported significant improvements in levels of knowledge, understanding and skills in each of the eight areas evaluated. The training was beneficial for those with prior experience in the area of ethics and data linkage as well as those with no prior exposure. Our preliminary work in this area demonstrates that the provision of intensive face to face ethics training in data linkage is feasible and has a significant impact on participant's confidence in reviewing HREC applications.
Ethics Leadership in Research, Healthcare and Organizational Systems: Commentary and Critical Reflections
Gabriele, Edward F.
In the last decades there has arisen a greater awareness of the ever present need for critical academic reflection on the nature of ethics leadership and committees in research, healthcare, and organizational systems. Yet what is meant by ethics itself? How is ethics understood as a historical phenomenon? What challenges must ethics leaders face…
[Ethical aspects of clinical drug research in critically ill children].
Tromp, Krista; de Wildt, Saskia N
All critically ill children admitted to a paediatric intensive care unit (PICU) receive drug treatment. However, the majority of these drugs has never been tested in these children, and their safety and efficacy have not been proven. Clinical drug research is therefore required in this patient group. While doing this research we need to balance between the advancement of knowledge--and thereby potential improvements in clinical care--and protection of a vulnerable population against harm and exploitation. The PICU environment and the vulnerable population raise specific ethical challenges and mean that the research should be designed and conducted with care. The ethical challenges are related to 4 areas: a) study design and conduct; b) informed consent from parents and children; c) burden and risk for the child; and d) research or experimental treatment. These challenges and possible solutions will be discussed in this article.
Research site monitoring for compliance with ethics regulatory standards: review of experience from Uganda.
Ochieng, Joseph; Ecuru, Julius; Nakwagala, Frederick; Kutyabami, Paul
On site monitoring of research is one of the most effective ways to ensure compliance during research conduct. However, it is least carried out primarily for two reasons: presumed high costs both in terms of human resources and finances; and the lack of a clear framework for undertaking site monitoring. In this paper we discuss a model for research site monitoring that may be cost effective and feasible in low resource settings. This was a retrospective review of research site monitoring reports covering a period of four years. The monitoring was conducted by the Uganda National Council for Science and Technology, the National Drug Authority and the National HIV/AIDS Research and Ethics Committee over the period 2007 to 2010.The monitoring team was usually three members comprising of two experts in research ethics and an assistant. A total of 28 site monitoring visits covering 40 research projects were reviewed. 25% of the site monitoring reports revealed violation of the regulatory requirement for valid ethical approval. 36% of the site reports showed some instances of informed consent violation, 28% showed violation of the rights and welfare of research participants, 38% revealed that sites did not report SAEs to regulatory authorities and many sites lacked adequate GCP and GCLP. However, most of the sites monitored had adequate facilities to conduct the respective studies and good working practices. This model employed by the monitoring teams to evaluate research compliance is effective in auditing ethical practice. Compliance monitoring is feasible and affordable in a resource limited setting. Research protocol non compliance is still a major problem in Uganda, and there is need for a pro-active approach to this vice by all stake holders if ethical conduct of research is to be achieved.
The HIV and Drug Abuse Prevention Research Ethics Training Institute: Training Early-Career Scientists to Conduct Research on Research Ethics.
Fisher, Celia B; Yuko, Elizabeth
The responsible conduct of HIV/drug abuse prevention research requires investigators with both the knowledge of and ability to generate empirical data that can enhance global ethical practices and policies. This article describes a multidisciplinary program offering early-career professionals a 2-year intensive summer curriculum along with funding to conduct a mentored research study on a wide variety of HIV/drug abuse research ethics topics. Now in its fifth year, the program has admitted 29 trainees who have to date demonstrated increased knowledge of research ethics, produced 17 peer-reviewed publications, 46 professional presentations, and submitted or been awarded five related federal grants. The institute also hosts a global information platform providing general and HIV/drug abuse relevant research ethics educational and research resources that have had more than 38,800 unique visitors from more than 150 countries. © The Author(s) 2015.
Black boxes on wheels: research challenges and ethical problems in MEA-based robotics
DEFF Research Database (Denmark)
Bentzen, Martin Mose
computer technology are not very good at adapting to surprising or unusual situations, at least not when compared to biological organisms. It is also hoped that insights gained from MEA-based robotics can have applications within human enhancement and medicine. In this paper, I argue that researchers...... and that they are not likely to be solved within the field. After that, I discuss whether MEA-based robotics should be considered pop science. Finally, I investigate the ethical aspects of this research....
The establishment of ethical committees for medical research.
Lahlum, Emil; Ruyter, Knut W
In this article we will describe the process that preceded the establishment of regional committees for medical research ethics in 1985. We will also take a look at the difficult initial period experienced by the committees in the eastern and southern regions. We have examined the material that has been submitted to the National Archives by the Research Council of Norway, the Ministry of Social Affairs and the Ministry of Education and Research, as well as the records of the Regional Committees for Medical and Health Research Ethics South-East. From the early 1970s the Norwegian Medical Association played a key role, for example by launching the proposal for "nationally dispersed committees" in 1977. There was widespread consensus that such committees were desirable, but everybody assumed that they would be funded by somebody else. As a result, the simplest model was chosen. The full set of regional committees was not established until 1987, and even more time passed before they were granted the funding that could ensure appropriate processing of cases. This was only achieved after the adoption of the Research Ethics Act in 2006. Unsolved financial issues were the key reason why this process was so prolonged. The organisational model proposed by the Norwegian Medical Association in 1977 is fairly similar to the one that the Health Research Act brought into place in 2009.
Written work: the social functions of Research Ethics Committee letters.
Dixon-Woods, Mary; Angell, Emma; Ashcroft, Richard E; Bryman, Alan
Research Ethics Committees (RECs) are increasingly institutionalised as a feature of research practice, but have remained strangely neglected by social scientists. In this paper, we argue that analysis of letters from RECs to researchers offers important insights into how RECs operate. We report a traditional content analysis and an ethnographic content analysis of 141 letters to researchers, together with an analysis of the organisational and institutional arrangements for RECs in the UK. We show that REC letters perform three important social functions. First, they define what is deemed by a REC to be ethical practice for any particular application, and confer authority on that definition. They do this actively, through comments on particular aspects of proposals, and passively, through silences about other aspects. Second, they provide an account of the work of the REC, and function as a form of institutional display. Third, they specify the nature of the relationship between the REC and the applicant, casting the applicant in a supplicant role and requiring forms of docility. Writing and reading REC letters require highly specific competences, and engage both parties in a Bourdieusian "game" that discourages challenges from researchers. The authority of RECs' decisions derives not from their appeal to the moral superiority of any ethical position, but through their place in the organisational structure and the social positioning of the parties to the process thus implied. Letters are the critical point at which RECs act on researchers and their projects.
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Yusuf Setiawan Syukur
Full Text Available According to the 1945 Constitution, the Audit Board of the Republic of Indonesia (BPK has an important role in fostering good governance and combating corruption in Indonesia's public sector through its audit works. To be successful, BPK must implement and enforce ethical behaviours within the organisation. There are laws and regulations (e.g., civil servants' code of ethics and employee discipline and systems, policies, and practices set up by authorities at BPK (e.g., BPK's code of ethics, whistle-blowing procedure, the Honourary Council of BPK's Code of Ethics (MKKE, and ethics training that regulate and influence behaviours of employees and members of the board. When reviewing literature, this paper attempts to understand the antecedents of ethical/unethical behaviours in organisations and look for best practices (including human resource management practices in developing ethical behaviours in organisations. It turns out that the ethical frameworks within BPK have a strong theoretical support. Despite the strong theoretical support from the literature, this study attempts to identify gaps between the best practices and ethical frameworks within BPK. In response to the gaps, this study attempts to offer recommendations so as to close the gaps and improve the ethical frameworks within BPK. In the end, this study produces seventeen recommendations. KEYWORDS code of ethics, ethical behaviours, human resource management, ethics audit, and ethical climate survey. ABSTRAK Berdasarkan Undang-undang Dasar 1945, Badan Pemeriksa Keuangan Republik Indonesia (BPK mempunyai peran penting dalam meningkatkan tata kelola pemerintahan yang baik dan memberantas korupsi di sektor publik di Indonesia melalui kegiatan pemeriksaannya. Agar sukses dalam mencapai tujuan tersebut, BPK harus menerapkan dan menegakkan perilaku etis di dalam organisasi. Ada undang-undang dan peraturan peraturan (contoh: kode etik Pegawai Negeri Sipil (PNS dan peraturan disiplin
ENRICH Forum: Ethical aNd Regulatory Issues in Cancer ResearcH
ENRICH Forum: Ethical aNd Regulatory Issues in Cancer ResearcH, designed to stimulate dialogue on ethical and regulatory issues in cancer research and promote awareness of developing policies and best practices.
[About the genesis of the first Polish local research ethics committee].
Paprocka-Lipinska, Anna
From the moment in which the development of medicine became necessary experimental research involving human subjects, the question arose about the ethical limits and limitations of the experiment. The turning point was the year 1947. The Nuremberg Code was formulated after the disclosure of pseudo-medical experiments involving human subjects during the Second World War. In 1964, the medical world accepted the Declaration of Helsinki, which, however, did not prevent abuses and it became necessary to appoint independent ethics committees supervising and enforcing the application of ethics in biomedical experiments. In Poland in the 60's and 70's started a discussion on the ethical rules related to conduct of research involving humans. The initiators of the appointment of bioethics committees were professors of medicine, inspiring experiences of their Western colleagues. It was difficult for reasons of political ideologies to convince the authorities to use the best of western solutions. This paper attempts to describe the circumstances connected with the appointment in 1979 at the Medical University of Gdansk, the first Polish bioethics committee.
Screening for depression in medical research: ethical challenges and recommendations
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Sheehan Aisling M
Full Text Available Abstract Background Due to the important role of depression in major illnesses, screening measures for depression are commonly used in medical research. The protocol for managing participants with positive screens is unclear and raises ethical concerns. The aim of this article is to identify and critically discuss the ethical issues that arise when a positive screen for depression is detected, and offer some guidance on managing these issues. Discussion Deciding on whether to report positive screens to healthcare practitioners is both an ethical and a pragmatic dilemma. Evidence suggests that reporting positive depression screens should only be considered in the context of collaborative care. Possible adverse effects, such as the impact of false-positive results, potentially inappropriate labelling, and potentially inappropriate treatment also need to be considered. If possible, the psychometric properties of the selected screening measure should be determined in the target population, and a threshold for depression that minimises the rate of false-positive results should be chosen. It should be clearly communicated to practitioners that screening scores are not diagnostic for depression, and they should be informed about the diagnostic accuracy of the measure. Research participants need to be made aware of the consequences of the detection of high scores on screening measures, and to be fully informed about the implications of the research protocol. Summary Further research is needed and the experiences of researchers, participants, and practitioners need to be collated before the value of reporting positive screens for depression can be ascertained. In developing research protocols, the ethical challenges highlighted should be considered. Participants must be agreeable to the agreed protocol and efforts should be made to minimise potentially adverse effects.
Screening for depression in medical research: ethical challenges and recommendations.
Sheehan, Aisling M; McGee, Hannah
Due to the important role of depression in major illnesses, screening measures for depression are commonly used in medical research. The protocol for managing participants with positive screens is unclear and raises ethical concerns. The aim of this article is to identify and critically discuss the ethical issues that arise when a positive screen for depression is detected, and offer some guidance on managing these issues. Deciding on whether to report positive screens to healthcare practitioners is both an ethical and a pragmatic dilemma. Evidence suggests that reporting positive depression screens should only be considered in the context of collaborative care. Possible adverse effects, such as the impact of false-positive results, potentially inappropriate labelling, and potentially inappropriate treatment also need to be considered. If possible, the psychometric properties of the selected screening measure should be determined in the target population, and a threshold for depression that minimises the rate of false-positive results should be chosen. It should be clearly communicated to practitioners that screening scores are not diagnostic for depression, and they should be informed about the diagnostic accuracy of the measure. Research participants need to be made aware of the consequences of the detection of high scores on screening measures, and to be fully informed about the implications of the research protocol. Further research is needed and the experiences of researchers, participants, and practitioners need to be collated before the value of reporting positive screens for depression can be ascertained. In developing research protocols, the ethical challenges highlighted should be considered. Participants must be agreeable to the agreed protocol and efforts should be made to minimise potentially adverse effects.
Animal models in biological and biomedical research - experimental and ethical concerns
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Full Text Available ABSTRACT Animal models have been used in experimental research to increase human knowledge and contribute to finding solutions to biological and biomedical questions. However, increased concern for the welfare of the animals used, and a growing awareness of the concept of animal rights, has brought a greater focus on the related ethical issues. In this review, we intend to give examples on how animals are used in the health research related to some major health problems in Brazil, as well as to stimulate discussion about the application of ethics in the use of animals in research and education, highlighting the role of National Council for the Control of Animal Experimentation (Conselho Nacional de Controle de Experimentação Animal - CONCEA in these areas. In 2008, Brazil emerged into a new era of animal research regulation, with the promulgation of Law 11794, previously known as the Arouca Law, resulting in an increased focus, and rapid learning experience, on questions related to all aspects of animal experimentation. The law reinforces the idea that animal experiments must be based on ethical considerations and integrity-based assumptions, and provides a regulatory framework to achieve this. This review describes the health research involving animals and the current Brazilian framework for regulating laboratory animal science, and hopes to help to improve the awareness of the scientific community of these ethical and legal rules.
Animal models in biological and biomedical research - experimental and ethical concerns.
Andersen, Monica L; Winter, Lucile M F
Animal models have been used in experimental research to increase human knowledge and contribute to finding solutions to biological and biomedical questions. However, increased concern for the welfare of the animals used, and a growing awareness of the concept of animal rights, has brought a greater focus on the related ethical issues. In this review, we intend to give examples on how animals are used in the health research related to some major health problems in Brazil, as well as to stimulate discussion about the application of ethics in the use of animals in research and education, highlighting the role of National Council for the Control of Animal Experimentation (Conselho Nacional de Controle de Experimentação Animal - CONCEA) in these areas. In 2008, Brazil emerged into a new era of animal research regulation, with the promulgation of Law 11794, previously known as the Arouca Law, resulting in an increased focus, and rapid learning experience, on questions related to all aspects of animal experimentation. The law reinforces the idea that animal experiments must be based on ethical considerations and integrity-based assumptions, and provides a regulatory framework to achieve this. This review describes the health research involving animals and the current Brazilian framework for regulating laboratory animal science, and hopes to help to improve the awareness of the scientific community of these ethical and legal rules.
From bench to bedside and to health policies (and back): ethics in translational research.
Petrini, Carlo
The medical aim of translational research is to smooth the transition of discoveries made through basic research from the laboratory bench to their diagnostic or therapeutic applications for patients. These applications may be extended to current clinical practice and to health policies. The converse is also important: health policies should provide a point of departure when identifying research priorities. Translational research poses the same ethical problems as trials with human subjects - albeit in different ways. One of the more significant problems is the risk for participants in trials: it is thus necessary to ensure that the risks to which these subjects are exposed are not out of proportion to the expected benefits. Translational research does not require new ethical principles, but existing biomedical principles need to be adjusted to the specific context. The well-being of participants should always be the primary objective; these persons should never be considered as means for the advancement of knowledge or for the improvement of applications.
Ethical Considerations When Using Social Media for Research.
Hammer, Marilyn J
Because of its adaptation across age groups and populations, social media is being used as a venue for the conduction of research studies. The implications for use of social media to streamline data collection and analyses to understand epidemiologic effects of disease are intriguing. Public access to personalized Internet-based searches and conversations for patients with or at risk for cancer can potentially allow providers to target individuals for earlier interventions and improved outcomes. Although publicly posted, the use of personal information to solicit research participants, implement interventions, or abstract information for research studies raises questions regarding maintaining the ethical conduct of research.
Curriculum and Faculty Development for the Teaching of Academic Research Ethics.
Stern, Judy E.; Elliott, Deni
This report summarizes a three-year project to design a graduate level course in ethics and scientific research at Dartmouth College (New Hampshire). The goals of the project were: (1) to train faculty to teach a course in research ethics, (2) to pilot-teach a graduate course in ethics and scientific research, and (3) to develop teaching materials…
Research Ethics Education in Post-Graduate Medical Curricula in I.R. Iran.
Nikravanfard, Nazila; Khorasanizadeh, Faezeh; Zendehdel, Kazem
Research ethics training during post-graduate education is necessary to improve ethical standards in the design and conduct of biomedical research. We studied quality and quantity of research ethics training in the curricula of post-graduate programs in the medical science in I.R. Iran. We evaluated curricula of 125 post-graduate programs in medical sciences in I.R. Iran. We qualitatively studied the curricula by education level, including the Master and PhD degrees and analyzed the contents and the amount of teaching allocated for ethics training in each curriculum. We found no research ethics training in 72 (58%) of the programs. Among the 53 (42%) programs that considered research ethics training, only 17 programs had specific courses for research ethics and eight of them had detailed topics on their courses. The research ethics training was optional in 25% and mandatory in 76% of the programs. Post-graduate studies that were approved in the more recent years had more attention to the research ethics training. Research ethics training was neglected in most of the medical post-graduate programs. We suggest including sufficient amount of mandatory research ethics training in Master and PhD programs in I.R. Iran. Further research about quality of research ethics training and implementation of curricula in the biomedical institutions is warranted. © 2016 John Wiley & Sons Ltd.
Resources to Support Ethical Practice in Evaluation: An Interview with the Director of the National Center for Research and Professional Ethics
Goodyear, Leslie
Where do evaluators find resources on ethics and ethical practice? This article highlights a relatively new online resource, a centerpiece project of the National Center for Professional and Research Ethics (NCPRE), which brings together information on best practices in ethics in research, academia, and business in an online portal and center. It…
Science Fiction, Ethics and the Human Condition
DEFF Research Database (Denmark)
Baron, Christian; Halvorsen, Peter Nicolai; Cornea, Christine
This book explores what science fiction can tell us about the human condition in a technological world (with the dilemma's and consequences that this entails) and also engages with the genre at points where we apparently find it on the far side of science, technology or human existence. As such, ...
Physician Encounters with Human Trafficking: Legal Consequences and Ethical Considerations.
Todres, Jonathan
There is growing recognition and evidence that health care professionals regularly encounter-though they may not identify-victims of human trafficking in a variety of health care settings. Identifying and responding appropriately to trafficking victims or survivors requires not only training in trauma-informed care but also consideration of the legal and ethical issues that arise when serving this vulnerable population. This essay examines three areas of law that are relevant to this case scenario: criminal law, with a focus on conspiracy; service provider regulations, with a focus on mandatory reporting laws; and human rights law. In addition to imposing a legal mandate, the law can inform ethical considerations about how health care professionals should respond to human trafficking. © 2017 American Medical Association. All Rights Reserved.
Advance Directives of Will (Living Will: Ethical and Legal Implications Based on the Principle of Dignity of Human Person
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Maria Aparecida Alkimim
Full Text Available This paper, with methodology of philosophical, bibliographical and documentary research intends to apply the principle of dignity of human person to the vicissitudes around the advance directives of will, to the ethical aspects disciplined by the Code of Medical Ethics, as well as to what regards the legal aspects, involving the Federal Constitution, the Civil Code, the Code of Medical Ethics and the Resolution 1995/2012 (CFM. The principle of dignity of human person along with the consequent application in the principles of bioethics is considered in a personalistic perspective. This kind of approach is indicative of the interdisciplinarity of bioethics.
The ethics of conducting graduate medical education research on residents.
Keune, Jason D; Brunsvold, Melissa E; Hohmann, Elizabeth; Korndorffer, James R; Weinstein, Debra F; Smink, Douglas S
The field of graduate medical education (GME) research is attracting increased attention and broader participation. The authors review the special ethical and methodological considerations pertaining to medical education research. Because residents are at once a convenient and captive study population, a risk of coercion exists, making the provision of consent important. The role of the institutional review board (IRB) is often difficult to discern because GME activities can have multiple simultaneous purposes, educational activities may go forward with or without a research component, and the subjects of educational research studies are not patients. The authors provide a road map for researchers with regard to research oversight by the IRB and also address issues related to research quality. The matters of whether educational research studies should have educational value for the study subject and whether to use individual information obtained when residents participate as research subjects are explored.
Walker, Rebecca; Morrissey, Clair
While bioethics as a field has concerned itself with methodological issues since the early years, there has been no systematic examination of how ethics is incorporated into research on the Ethical, Legal and Social Implications (ELSI) of the Human Genome Project. Yet ELSI research may bear a particular burden of investigating and substantiating its methods given public funding, an explicitly cross-disciplinary approach, and the perceived significance of adequate responsiveness to advances in genomics. We undertook a qualitative content analysis of a sample of ELSI publications appearing between 2003-2008 with the aim of better understanding the methods, aims, and approaches to ethics that ELSI researchers employ. We found that the aims of ethics within ELSI are largely prescriptive and address multiple groups. We also found that the bioethics methods used in the ELSI literature are both diverse between publications and multiple within publications, but are usually not themselves discussed or employed as suggested by bioethics method proponents. Ethics in ELSI is also sometimes undistinguished from related inquiries (such as social, legal, or political investigations). PMID:23796275
Philanthropy and Human Rights in Business Ethics
DEFF Research Database (Denmark)
Larsen, Øjvind
are summarized in the UN universal human rights, which has become the common normative reference for global philanthropy. In this way philanthropy has become, in a modern sense, a charitable act with the aim to promote human happiness independent of gender, class, race, etc. This is the genealogy of the modern...... remains: what does philanthropy mean? In a Greek context, philanthropy is connected to a friendly act towards one's owns close connections such as family or fellow citizens, and normally utilized to promote one's own prestige in the city-state. In Roman context, universal humanism, humanitas, was invented...
The ethics of biosafety considerations in gain-of-function research resulting in the creation of potential pandemic pathogens.
Evans, Nicholas Greig; Lipsitch, Marc; Levinson, Meira
This paper proposes an ethical framework for evaluating biosafety risks of gain-of-function (GOF) experiments that create novel strains of influenza expected to be virulent and transmissible in humans, so-called potential pandemic pathogens (PPPs). Such research raises ethical concerns because of the risk that accidental release from a laboratory could lead to extensive or even global spread of a virulent pathogen. Biomedical research ethics has focused largely on human subjects research, while biosafety concerns about accidental infections, seen largely as a problem of occupational health, have been ignored. GOF/PPP research is an example of a small but important class of research where biosafety risks threaten public health, well beyond the small number of persons conducting the research.We argue that bioethical principles that ordinarily apply only to human subjects research should also apply to research that threatens public health, even if, as in GOF/PPP studies, the research involves no human subjects. Specifically we highlight the Nuremberg Code's requirements of 'fruitful results for the good of society, unprocurable by other methods', and proportionality of risk and humanitarian benefit, as broad ethical principles that recur in later documents on research ethics and should also apply to certain types of research not involving human subjects. We address several potential objections to this view, and conclude with recommendations for bringing these ethical considerations into policy development. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
Ethical approaches to adolescent participation in sexual health research.
Flicker, Sarah; Guta, Adrian
In this paper we make the case for the importance of adolescent sexual health research, and argue that requiring parental consent for adolescent participation may (a) be unwarranted, (b) be inconsistent with the principles of justice and inclusiveness, (c) be confusing, and (d) serve to silence young people who most need to have a voice in sexual health research. Through a case study of the Toronto Teen Survey, we offer concrete suggestions and alternatives for protecting adolescent health research participants in community-based settings and promoting ethical research approaches. Strategies suggested include: (1) adopting a community-based participatory research approach, (2) careful attention to youth-friendly protocols and consent procedures, (3) proper training of all research staff and peer researchers, (4) partnering with experienced community based youth-serving agencies, (5) paying maximum attention to issues of confidentiality and anonymity, and (6) valuing participation appropriately. Institutional review boards and researchers should be encouraged to adopt localized context-dependent strategies that attend to the unique vulnerabilities of their particular study populations. Attention to flexibility, vulnerability, and community-specific needs is necessary to ensure appropriate ethical research practices that attend to the health and well-being of young people.
Research ethics: ethical issues of data reporting and the quest for authenticity.
Marco, C A; Larkin, G L
The search for truth and its unbiased reporting are ultimate goals of conducting scientific research. Ideally, the reporting of research data ought to be an objective task. In practice, however, it is fraught with numerous statistical and ethical pitfalls, seldom addressed in formal emergency medicine training. The lure of academic celebrity and related influences may persuade researchers to report results in ways that make data appear more interesting, or worthy of publication. Several examples of potentially misleading data reporting are illustrated, including using inappropriate statistical tests, neglecting negative results, omitting missing data points, failing to report actual numbers of eligible subjects, using inappropriate graph labels or terminology, data dredging, and others. Although potentially inaccurate or inflated methods of data reporting may not constitute overt scientific misconduct, the intentional misrepresentation of data is a form of fraud or deception. Publicly funded academic inquiry is a privilege and honor enjoyed by a trusted few. Regardless of outcome, every effort should be made to report data in the most scientifically accurate method. To this end, the Society for Academic Emergency Medicine Code of Conduct and American College of Emergency Physicians Code of Ethics provide important guidance toward the accurate, compassionate, competent, impartial, and honest conduct of scientific research. Accuracy and authenticity in data reporting are first and foremost a matter of individual integrity, and are crucial to the preservation of academic credibility, the protection of future patients, and the public's trust in the medical research enterprise.
Cloning humans? Biological, ethical, and social considerations.
Ayala, Francisco J
There are, in mankind, two kinds of heredity: biological and cultural. Cultural inheritance makes possible for humans what no other organism can accomplish: the cumulative transmission of experience from generation to generation. In turn, cultural inheritance leads to cultural evolution, the prevailing mode of human adaptation. For the last few millennia, humans have been adapting the environments to their genes more often than their genes to the environments. Nevertheless, natural selection persists in modern humans, both as differential mortality and as differential fertility, although its intensity may decrease in the future. More than 2,000 human diseases and abnormalities have a genetic causation. Health care and the increasing feasibility of genetic therapy will, although slowly, augment the future incidence of hereditary ailments. Germ-line gene therapy could halt this increase, but at present, it is not technically feasible. The proposal to enhance the human genetic endowment by genetic cloning of eminent individuals is not warranted. Genomes can be cloned; individuals cannot. In the future, therapeutic cloning will bring enhanced possibilities for organ transplantation, nerve cells and tissue healing, and other health benefits.
Research across the disciplines: a road map for quality criteria in empirical ethics research
Background Research in the field of Empirical Ethics (EE) uses a broad variety of empirical methodologies, such as surveys, interviews and observation, developed in disciplines such as sociology, anthropology, and psychology. Whereas these empirical disciplines see themselves as purely descriptive, EE also aims at normative reflection. Currently there is literature about the quality of empirical research in ethics, but little or no reflection on specific methodological aspects that must be considered when conducting interdisciplinary empirical ethics. Furthermore, poor methodology in an EE study results in misleading ethical analyses, evaluations or recommendations. This not only deprives the study of scientific and social value, but also risks ethical misjudgement. Discussion While empirical and normative-ethical research projects have quality criteria in their own right, we focus on the specific quality criteria for EE research. We develop a tentative list of quality criteria – a "road map" – tailored to interdisciplinary research in EE, to guide assessments of research quality. These quality criteria fall into the categories of primary research question, theoretical framework and methods, relevance, interdisciplinary research practice and research ethics and scientific ethos. Summary EE research is an important and innovative development in bioethics. However, a lack of standards has led to concerns about and even rejection of EE by various scholars. Our suggested orientation list of criteria, presented in the form of reflective questions, cannot be considered definitive, but serves as a tool to provoke systematic reflection during the planning and composition of an EE research study. These criteria need to be tested in different EE research settings and further refined. PMID:24580847
Research across the disciplines: a road map for quality criteria in empirical ethics research.
Mertz, Marcel; Inthorn, Julia; Renz, Günter; Rothenberger, Lillian Geza; Salloch, Sabine; Schildmann, Jan; Wöhlke, Sabine; Schicktanz, Silke
Research in the field of Empirical Ethics (EE) uses a broad variety of empirical methodologies, such as surveys, interviews and observation, developed in disciplines such as sociology, anthropology, and psychology. Whereas these empirical disciplines see themselves as purely descriptive, EE also aims at normative reflection. Currently there is literature about the quality of empirical research in ethics, but little or no reflection on specific methodological aspects that must be considered when conducting interdisciplinary empirical ethics. Furthermore, poor methodology in an EE study results in misleading ethical analyses, evaluations or recommendations. This not only deprives the study of scientific and social value, but also risks ethical misjudgement. While empirical and normative-ethical research projects have quality criteria in their own right, we focus on the specific quality criteria for EE research. We develop a tentative list of quality criteria--a "road map"--tailored to interdisciplinary research in EE, to guide assessments of research quality. These quality criteria fall into the categories of primary research question, theoretical framework and methods, relevance, interdisciplinary research practice and research ethics and scientific ethos. EE research is an important and innovative development in bioethics. However, a lack of standards has led to concerns about and even rejection of EE by various scholars. Our suggested orientation list of criteria, presented in the form of reflective questions, cannot be considered definitive, but serves as a tool to provoke systematic reflection during the planning and composition of an EE research study. These criteria need to be tested in different EE research settings and further refined.
Qualitative Study to improve integrity of NET : Perspectives of Peer review and Authorship in research ethics
Energy Technology Data Exchange (ETDEWEB)
Kwon, Hyuk; Min, Byung Joo [Korea Atomic Energy Research Institute, Daejeon (Korea, Republic of)
After Dr. Hwang's Human embryonic stem cell scandal, research ethics stood out as the hot issue in both Korean scientific circles and general public. Science Publishing Group referred the limitation of peer review system and the absence of responsibility of author to one of the causes for the scandal. In order to prevent a similar fraud, Ministry of Science and Technology(MOST) established guidelines for research ethics and integrity in 2006. The guidelines included fabrication, falsification, and plagiarism(FFP) and unfair authorship. MOST committed the authority of administration and supervision to the society and the institutes of research to preserve the research integrity. The society and institute are charged with overseeing the implementation of enacted ethics guidelines. SCI(Scientific Citation Index) holds the guideline of research ethics and canon of the society which were crafted in order to guaranty the integrity and quality of the research. The publication policy pertains submission of articles, authorship and responsibilities of a reviewer. Societies pay attention to the peer review policy because the quality of articles is strongly dependent on the peer review. Nuclear Engineering and Technology (NET) is the journal of Korea Nuclear Society(KNS). NET is registered with SCIE(Science Citation Index Expanded), recently. In addition to the growth in external circulation, the improvement of quality requires the effort of the society to establish a strict peer review system and a fair authorship. The qualitative study on peer review and authorship of NET was put into force to improve the quality of NET. Based on studies and suggestions, the policy focuses on research ethics to improve the integrity of NET.
A Delicate Balancing Act: Negotiating with Gatekeepers for Ethical Research When Researching Minority Communities
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Ruth McAreavey PhD
Full Text Available Research and processes of knowledge production are often based on racialised and imperialistic frameworks that have led to either the exclusion or the pathologisation of minority groups. Researchers address issues of exclusion by adopting recruitment strategies that involve negotiating with gatekeepers to ensure the inclusion of minority or marginalised groups. This often involves in-depth scrutiny of gatekeepers and requires the researchers to negotiate deals and to make personal disclosures. However, there remains relatively little discussion on the pragmatic ethical issues facing researchers in the field as a result of these interactions. This article suggests that interactions with gatekeepers present ethical issues that can be effectively addressed and managed by researchers through the exercise of phronesis. Phronesis allows researchers to make critical ethical decisions based on the specific characteristics of the research sites and subjects, not least of which are those issues that emerge as a consequence of researcher positionality. Such decisions are not necessarily identified or accommodated through bureaucratic processes which govern research ethics. We advance the notion of research ethics as an ongoing process that requires researcher skills and engagement, rather than a one-off bureaucratic exercise.
Qualitative research ethics on the spot: Not only on the desktop.
Øye, Christine; Sørensen, Nelli Øvre; Glasdam, Stinne
The increase in medical ethical regulations and bureaucracy handled by institutional review boards and healthcare institutions puts the researchers using qualitative methods in a challenging position. Based on three different cases from three different research studies, the article explores and discusses research ethical dilemmas. First, and especially, the article addresses the challenges for gatekeepers who influence the informant's decisions to participate in research. Second, the article addresses the challenges in following research ethical guidelines related to informed consent and doing no harm. Third, the article argues for the importance of having research ethical guidelines and review boards to question and discuss the possible ethical dilemmas that occur in qualitative research. Research ethics must be understood in qualitative research as relational, situational, and emerging. That is, that focus on ethical issues and dilemmas has to be paid attention on the spot and not only at the desktop. © The Author(s) 2015.
Ethical and efficient research management: A new challenge for an old problem⋆
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Giesen Eva
Full Text Available Scientific misconduct and questionable research practices occur on occasion because scientific research is performed by human beings. With growing pressure to produce results, competition for limited resources and in a well-informed society, however, the number of reported cases has increased more than 10 fold in 10 years. Moreover, the impact of cases of fraud, poor quality of data and unethical research management is high and scientists are concerned by this phenomenon. Codes of conduct and investigations for misconduct are in place in most fields. Preventive actions however are difficult to conduct because managerial tools are missing or unknown by scientists. Here we describe the concept of Ethical and efficient research management and its use for preventive measures against bad research practice. The concept is based on the belief that sustainable management of a research team, project or collaboration is not possible without ethical conduct of management. Ethical and efficient research and research management are thus intrinsically connected. The Inserm-Quality-Network (Riq, uses currently management tools for different purposes: organization, quality management, quality control, knowledge management, project management and so forth and has adapted them for purpose of good research practice (http://extranet.inserm.fr/demarche-qualite/reseau-inserm-qualite.
Reputational Risk, Academic Freedom and Research Ethics Review.
Hedgecoe, Adam
Drawing on scholarship around academic freedom and new public management, this article explores the way in which research ethics committees in UK universities (URECs) can come to exhibit behaviour - common in their US equivalents - that prioritises the reputational protection of their host institution over and above academic freedom and the protection of research subjects. Drawing on two case studies the article shows both how URECs can serve to restrict research that may be 'embarrassing' for a university and how, in high profile cases, university management come to use such committees as mechanisms for internal discipline.
Current issues in medically assisted reproduction and genetics in Europe: research, clinical practice, ethics, legal issues and policy. European Society of Human Genetics and European Society of Human Reproduction and Embryology.
Harper, Joyce C; Geraedts, Joep; Borry, Pascal; Cornel, Martina C; Dondorp, Wybo; Gianaroli, Luca; Harton, Gary; Milachich, Tanya; Kääriäinen, Helena; Liebaers, Inge; Morris, Michael; Sequeiros, Jorge; Sermon, Karen; Shenfield, Françoise; Skirton, Heather; Soini, Sirpa; Spits, Claudia; Veiga, Anna; Vermeesch, Joris Robert; Viville, Stéphane; de Wert, Guido; Macek, Milan
In March 2005, a group of experts from the European Society of Human Genetics and European Society of Human Reproduction and Embryology met to discuss the interface between genetics and assisted reproductive technology (ART), and published an extended background paper, recommendations and two Editorials. Seven years later, in March 2012, a follow-up interdisciplinary workshop was held, involving representatives of both professional societies, including experts from the European Union Eurogentest2 Coordination Action Project. The main goal of this meeting was to discuss developments at the interface between clinical genetics and ARTs. As more genetic causes of reproductive failure are now recognised and an increasing number of patients undergo testing of their genome before conception, either in regular health care or in the context of direct-to-consumer testing, the need for genetic counselling and preimplantation genetic diagnosis (PGD) may increase. Preimplantation genetic screening (PGS) thus far does not have evidence from randomised clinical trials to substantiate that the technique is both effective and efficient. Whole-genome sequencing may create greater challenges both in the technological and interpretational domains, and requires further reflection about the ethics of genetic testing in ART and PGD/PGS. Diagnostic laboratories should be reporting their results according to internationally accepted accreditation standards (International Standards Organisation - ISO 15189). Further studies are needed in order to address issues related to the impact of ART on epigenetic reprogramming of the early embryo. The legal landscape regarding assisted reproduction is evolving but still remains very heterogeneous and often contradictory. The lack of legal harmonisation and uneven access to infertility treatment and PGD/PGS fosters considerable cross-border reproductive care in Europe and beyond. The aim of this paper is to complement previous publications and provide
Ethical Concerns About Human Genetic Enhancement in the Malay Science Fiction Novels.
Isa, Noor Munirah; Hj Safian Shuri, Muhammad Fakhruddin
Advancements in science and technology have not only brought hope to humankind to produce disease-free offspring, but also offer possibilities to genetically enhance the next generation's traits and capacities. Human genetic enhancement, however, raises complex ethical questions, such as to what extent should it be allowed? It has been a great challenge for humankind to develop robust ethical guidelines for human genetic enhancement that address both public concerns and needs. We believe that research about public concerns is necessary prior to developing such guidelines, yet the issues have not been thoroughly investigated in many countries, including Malaysia. Since the novel often functions as a medium for the public to express their concerns, this paper explores ethical concerns about human genetic enhancement expressed in four Malay science fiction novels namely Klon, Leksikon Ledang, Transgenesis Bisikan Rimba and Transgenik Sifar. Religion has a strong influence on the worldview of the Malays therefore some concerns such as playing God are obviously religious. Association of the negative image of scientists as well as the private research companies with the research on human genetic enhancement reflects the authors' concerns about the main motivations for conducting such research and the extent to which such research will benefit society.
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Eduardo Rodríguez Yunta
Full Text Available El presente artículo reflexiona sobre las implicaciones éticas de usar modelos animales para el desarrollo de la medicina en seres humanos. Entre las posturas extremas de condenar toda investigación con animales considerándola irrelevante y la de exagerar y promocionar el importante papel de la investigación con animales como modelo para enfermedades humanas, se adopta la postura intermedia de considerar el uso de animales en investigación como necesario en el estado actual de la ciencia para ajustarse al imperativo moral de curar y prevenir enfermedades humanas, pero buscando formas de reemplazar y reducir el número de animales y de disminuir su sufrimientoO presente artigo reflete sobre as implicações ética de usar modelos animais para o desenvolvimento da medicina em sereres humanos. Entre as posturas extremas, uma é a de condenar todas as pesquisas com animais, considerando-a irrelevante e a outra postura, é a de exagerar e promover o importante papel da pesquisa com animais como modelo para enfermidades humanas. Adota-se uma postura intermediária de considerarar o uso de animais em pesquisa, como necessária para o estado atual da ciência para se ajustarao imperativo moral de curar e prevenir enfermidades humanas, porém buscando formas de substituir e reduzir o número de animais e de diminuir seu sofrimentoThis paper argues about the ethical implications of using animals as models for human medicine development. This reflection adopts an intermediate stand between the extreme positions of condemning all research with animals, considering it irrelevant, and that of exaggerating and promoting research with animals as models for human diseases. Our stand considers that in the current scientific state, research with animals is necessary for adjusting to the moral imperative of curing and preventing human diseases, but methods for replacing and reducing the number of animals as well as diminishing their suffering must be sought
Science Fiction, Ethics and the Human Condition
DEFF Research Database (Denmark)
Baron, Christian; Halvorsen, Peter Nicolai; Cornea, Christine
This book explores what science fiction can tell us about the human condition in a technological world (with the dilemma's and consequences that this entails) and also engages with the genre at points where we apparently find it on the far side of science, technology or human existence. As such......, it is the result of the joint efforts of scholars and scientists from various disciplines. While some of the contributors to this volume have been working professionally with science fiction for some time, others are newcomers who bring perspectives from their own field of specialization to the study of this genre....... It is our hope that this interdisciplinary approach will set an example for those who, like us, have been busy assessing the ways in which fictional attempts to fathom the possibilities of science and technology speak to central concerns about what it means to be human in a contemporary world of technology...
Do Chinese Researchers Conduct Ethical Research and Use Ethics Committee Review in Clinical Trials of Anti-Dementia Drugs? An Analysis of Biomedical Publications Originating from China.
Zeng, Lingfeng; Liang, Weixiong; Pan, Jianke; Cao, Ye; Liu, Jun; Wang, Qi; Wang, Lu; Zou, Yuanping; Wang, Kezhu; Kong, Lingshuo; Xie, Hui; Xu, Weihua; Li, Weirong; Zhao, Wei; Mi, Suiqing; Chen, Yunbo; Cheng, Shuyi; Li, Xiaoyan; Cao, Qian; Zeng, Xing; Wang, Ningsheng
Medical research using human participants must conform to the basic ethical principles found in the Declaration of Helsinki (DoH) of the World Medical Association. The purpose of this review was to assess whether journals in China have improved in regard to the fulfillment of ethical disclosure procedures for clinical trials of anti-dementia drugs. Four medical databases were searched for articles reporting clinical trials of oral anti-dementia drugs published in China in 2003, 2009, and 2014. The frequencies of reporting of informed consent from participants (ICP), approval of a regional ethical committee (REC), reference to DoH, and study registration were estimated respectively. Statistical analyses were conducted with SPSS v21 software. Among those randomized controlled trials published in 2003, 2009, and 2014, disclosure of REC approval was present for 2.67%, 1.15%, and 6.84%; statements of ICP were included in 9.33%, 7.76%, and 17.34%; reference to DoH was found for 4.00%, 1.44%, and 7.45%; and study registration reporting was included in 2.67%, 2.59%, and 9.28%, respectively. Improvements to reporting rates between 2009 and 2014 were seen, with more than twice as many trials reporting REC approval, ICP, reference to DoH, and study registration compared with 2009. Compared with 2003 and 2009, reporting rates for REC approval, ICP, reference to DoH, and study registration for clinical trials of anti-dementia drugs were enhanced in 2014 in the major medical journals of China. However, biomedical publications without definite statements of ethical considerations remain common, and this continues to be seen in Chinese journals. It is imperative that measures are taken to reinforce the ethical protection in clinical trials in China.
The use of animal tissues alongside human tissue: Cultural and ethical considerations.
Kaw, Anu; Jones, D Gareth; Zhang, Ming
Teaching and research facilities often use cadaveric material alongside animal tissues, although there appear to be differences in the way we handle, treat, and dispose of human cadaveric material compared to animal tissue. This study sought to analyze cultural and ethical considerations and provides policy recommendations on the use of animal tissues alongside human tissue. The status of human and animal remains and the respect because of human and animal tissues were compared and analyzed from ethical, legal, and cultural perspectives. The use of animal organs and tissues is carried out within the context of understanding human anatomy and function. Consequently, the interests of human donors are to be pre-eminent in any policies that are enunciated, so that if any donors find the presence of animal remains unacceptable, the latter should not be employed. The major differences appear to lie in differences in our perceptions of their respective intrinsic and instrumental values. Animals are considered to have lesser intrinsic value and greater instrumental value than humans. These differences stem from the role played by culture and ethical considerations, and are manifested in the resulting legal frameworks. In light of this discussion, six policy recommendations are proposed, encompassing the nature of consent, respect for animal tissues as well as human remains, and appropriate separation of both sets of tissues in preparation and display. © 2015 Wiley Periodicals, Inc.
Medical ethics and human rights in wartime
African Journals Online (AJOL)
Mar 9, 2015 ... ... to charge physicians with war crimes or crimes against humanity. The UK has taken action against a military physician who acted as an accessory to torture in Iraq (under Saddam Hussein), and another who failed to report suspected torture of prisoners while serv ing with the UK military in Afghanistan.
Regulatory Practices and School-based Research: Making Sense of Research Ethics/Review
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Susan Ann Tilley
Full Text Available This article focuses on the ethics/research review practices of a university Research Ethics Board (REB and a school board Research Review Committee (RRC. Applications to conduct school-based research submitted to the REB and RRC and in-depth, open-ended interviews with REB and RRC members serve as data for the study. In this paper, we highlight the institutional board decisions, especially requests for clarification documented in the applications, giving specific attention to applications proposing qualitative/teacher research. Empirical research focused on the inside workings of REBs and RRCs, which would provide particular kinds of knowledge related to research/ethics review, is recommended. URN: urn:nbn:de:0114-fqs0902326
A Consideration to Two Main Ethical Issues in Educational Research, and How May These Be Addressed
Abed, Mohaned Ghazi
This paper has firstly discussed the topic of Ethical Issues in Education, and has accordingly highlighted the fact that ethics are not something to deem at the commencement of a research project or fieldwork, but rather throughout the entire research process. Furthermore, two of the most important ethical issues have been given…
An Environmental Ethical Conceptual Framework for Research on Sustainability and Environmental Education
Kronlid, David O.; Ohman, Johan
This article suggests that environmental ethics can have great relevance for environmental ethical content analyses in environmental education and education for sustainable development research. It is based on a critique that existing educational research does not reflect the variety of environmental ethical theories. Accordingly, we suggest an…
Introducing Ethics to Chemistry Students in a "Research Experiences for Undergraduates" (REU) Program
Hanson, Mark J.
A three-day ethics seminar introduced ethics to undergraduate environmental chemistry students in the Research Experiences for Undergraduates (REU) program. The seminar helped students become sensitive to and understand the ethical and values dimensions of their work as researchers. It utilized a variety of resources to supplement lectures and…
Broadening Student Perspectives on Marketing Research Ethics: Development and Applications of a Teaching Module
Handlin, Amy
This paper describes an ethics module developed by the author to engage marketing research students during the fall semester, when they are bombarded by political polls. The module matches ethically questionable polling practices to similarly troubling practices in marketing research. The goals are to show that ethical principles are not topic- or…