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Main Encyclopedia of Global Bioethics
Encyclopedia of Global BioethicsHenk ten Have (eds.)
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Henk ten Have Editor Encyclopedia of Global Bioethics 1 3Reference Encyclopedia of Global Bioethics Henk ten Have Editor Encyclopedia of Global Bioethics With 22 Figures and 22 Tables Editor Henk ten Have Center for Healthcare Ethics Duquesne University Pittsburgh, PA, USA ISBN 978-3-319-09482-3 ISBN 978-3-319-09483-0 (eBook) ISBN 978-3-319-09484-7 (print and electronic bundle) DOI 10.1007/978-3-319-09483-0 Library of Congress Control Number: 2016936783 # Springer International Publishing Switzerland 2016 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made. Printed on acid-free paper This Springer imprint is published by Springer Nature The registered company is Springer International Publishing AG Switzerland. Preface Global bioethics is a relatively new and emerging discipline. The term was coined by Van Rensselaer Potter, who published his book Global Bioethics in 1988. This was partly the result of Potter's frustration. He had introduced the new word "bioethics" in 1970, arguing that a new approach to ethics was needed because of the rapid developments in medical science and technology. Scientific knowledge regarding life should be combined with knowledge of value systems. This new approach should be interdisciplinary since contemporary ethical problems are unprecedented and challenging. Environmental degradation, poverty, violence, war, and overpopulation all impact health and health care but can no longer be addressed through the usual ethical framework of medical ethics. Within a few years, bioethics became a popular label for the burgeoning field of applied ethics. But to Potter's dismay, it did not designate a new approach. In fact, bioethics as developed primarily in Western countries continued to be an upgraded biomedical ethics, focused on individual relations between patients and healthcare providers, and on the application of the latest scientific and technological knowledge. The new label only opened the door to philosophers and theologians into an area of ethics that previously was the exclusive domain of healthcare professionals. In this stage, Potter was not even recognized as the person who invented the term. Aware that a new approach is still needed, Potter started using "global bioethics." The basic problems with biomedical ethics, even if it is naming itself "bioethics," are threefold. First, it continues to elaborate an ethics of individuals and relations between individuals. Second, it is exclusively interested in the short-term consequences of medical and technological innovations. And third, it does not pay sufficient attention to the social, cultural, political, and environmental determinants of human life and health. Potter advanced two arguments to expand the field of bioethics. The first is the argument of the extension of ethics. For this argument he built on Aldo Leopold, the father of environmental ethics. Ethics should further evolve from a focus on relations between individuals, to relations between individuals and society, and finally to relations between human beings and their environment. The social context of ethical problems can no longer be ignored. At the same time, especially since the 1970s, awareness that the natural environment was seriously deteriorating, with damaging effects on human health, made the separation between biomedical and environmental ethics less and less tenable. These two fields of applied ethics should therefore merge into a broader v vi approach. This is exactly what is happening since then. Ethics in the context of healthcare is evolving from medical ethics into bioethics, healthcare ethics, or biomedical ethics, while today we are witnessing the emergence of global bioethics. Potter's second argument is the global scope of contemporary healthcare problems. Today's ethical challenges, as exemplified in this Encyclopedia, are produced by processes of globalization. The panorama of bioethical problems has changed. Patients travel across the world for medical interventions; organs, body parts, and tissues are trafficked from one country to another; physicians and nurses migrate from developing countries to Western countries; patients with malaria, tuberculosis, and AIDS are dying each day because they cannot afford effective drugs that are too expensive. The main problem with this increased mobility and interdependency is inequality. Medical science and technology are highly advanced and sophisticated but only available to a minority of the world population. The global scope of ethical problems nowadays implies that mainstream bioethics as it has developed during the last 50 years in Western countries is evolving into a broader approach that is relevant for people across the world and is focused on new global problems. Addressing these problems demands a broader vision of bioethics that not only goes beyond the current emphasis on individual autonomy and applications of medical technology but that criticizes the social, economic, and political context that is producing the problems at the global level. The adjective "global" in global bioethics demonstrates what should be new; it means "worldwide in scope," addressing the global nature of current problems that requires international cooperation, as well as "unified and comprehensive," incorporating a broad spectrum of ethical approaches, so that bioethics can really operate as a bridge. This Encyclopedia presents a wide range of subjects. The reader will recognize traditional ones such as abortion, genetic counseling, and transplantation medicine. As a more encompassing approach, global bioethics will incorporate the concerns and issues characterizing mainstream bioethics. But these topics will be examined within a global perspective. They are no longer relevant for developed countries or specific cultures, but due to the international character of healthcare they are now encountered in almost all countries and cultures. This requires a rethinking of their relevancy and governance. The Encyclopedia also discusses topics that are relatively new. Advocacy, biodiversity, care drain, food security, medical tourism, migration, poverty, and weapons, for example, have entered bioethical discourse as a result of globalization. As a work of tertiary literature, the Encyclopedia contains accumulated knowledge in an easily accessible format. It does not contain research literature (primary literature) or review articles summarizing original papers (secondary literature). Content therefore consists of established information in global bioethics. Each entry specifically addresses the ethical dimension of the subject. Each entry furthermore focuses on the global dimension of bioethics. Content does not present information that is specific for a particular country, region, religion, or tradition but has a global scope. Authors have been asked to structure the entry in a particular way: starting with the history and development of the topic so that the background will be clear; then providing a Preface Preface vii conceptual clarification, and if possible a definition; the main body of the text will elaborate the ethical dimension of the subject. Each entry has a limited number of references. It also gives a few recommendations for further reading, if the reader wishes to examine the topic in more detail. Initially, more than 400 contributions were scheduled. This edition of the Encyclopedia presents 358 entries. For various reasons, it proved difficult to materialize a number of relevant entries within the deadlines for production (e.g., bioterrorism, common heritage of humankind, hunger, and trafficking). Luckily, the work will be accessible online so that regular updates and additions can be made. Global bioethics, as a new area of ethics, is work in progress. It is in different stages of development in various parts of the world. New concerns and challenges will undoubtedly arise, current theoretical approaches will evolve, and global practices and activities will change. Hopefully, the Encyclopedia will assist the interested reader to find orientation and inspiration within this exciting scholarly field of ethics. Henk ten Have Editor-in-Chief Acknowledgment Setting up, coordinating, reviewing, revising, and publishing a work like this Encyclopedia of Global Bioethics would have been impossible without the encouragement, support, and assistance of many other people. The idea of an encyclopedia developed from the work for the Handbook of Global Bioethics that I edited together with Bert Gordijn (Dublin City University). Without his encouragement this multivolume work would never have seen the light. The same is true for my university. It provided the ideal circumstances for initiating a project of this magnitude, involving hundreds of authors from a wide range of countries. Duquesne University not only has an interest in promoting ethics in connection to sciences and professions but it also actively promotes teaching activities and research in ethics. The Center for Healthcare Ethics is benefitting from the active support of Duquesne's President Dr. Charles Dougherty, provost Dr. Timothy Austin, and Dr. James Swindal, Dean of the McAnulty College and Graduate School of Liberal Arts. In times of fiscal pressures they continued to support the Center; they also stimulated the scholarly work in global bioethics as an expression of Duquesne's mission of attentiveness to global concerns. The Center for Healthcare Ethics itself has been a fertile ground for a megaproject. Two of my graduate assistants have contributed enormously to its success as assistant managing editors. Gary Edwards and Michael Afolabi have first helped to identify potential authors from across the world. They were not easy to disappoint. Always searching the Internet and library, they were able to identify expert authors for each entry. They also provided tremendous help in reviewing the draft contributions, suggesting improvements in language and content so that the entries reflect the global dimension of the Encyclopedia. I am very grateful for their ideas, suggestions, and assistance. Fortunately, they also made their own contributions to the work in specific entries. Much support and encouragement was furthermore provided by members of the International Editorial Board. I had invited colleagues to join this board on the basis of global interest, expertise in various fields of applied ethics, and intimate knowledge of different cultures, traditions, and regions of the world. They all immediately accepted. They also provided a lot of help in finding expert authors and in reviewing submitted contributions. Without their input, the hundreds of entries could never have been included in the Encyclopedia. I would like to thank Toshitaka Adachi (Kameda College of Health Sciences, ix x Acknowledgment Kamogawa City, Chiba Prefecture, Japan), Roberto Andorno (University of Z€urich, Institute of Law, Switzerland), Alireza Bagheri (Tehran University Medical School, Tehran, Islamic Republic of Iran), Michael Barilan (Sackler Faculty of Medicine, Tel Aviv University, Israel), Ana Borovecki (Andrija Stampar School of Public Health, School of Medicine, University of Zagreb, Croatia), Roland Chia (Trinity Theological College, Singapore), Véronique Fournier (Director, Centre d'ethique Clinique, Hôpital Cochin, AP-HP, Paris, France), Gerard Magill (Vernon F. Gallagher Chair for the Integration of Science, Theology, Theology and Law, Center for Healthcare Ethics, Duquesne University, Pittsburgh, USA), Jeff Malpas (Philosophy and Gender Studies, Faculty of Arts, University of Tasmania, Australia), Cat Myser (Director of Ethics, Social Medicine and Global Health Programs, Florida Atlantic University, Boca Raton, USA), Paul Ndebele (Director, Medical Research Council, Zimbabwe, Harare, Zimbabwe), Maria do Céu Patrão Neves (former Member of the European Parliament, full professor of Ethics at the Department of Philosophy, University of the Acores, Portugal), Leo Pessini (San Camillus University Center, Sao Paulo, Brazil), Riaan Rheeder (Faculty of Theology, North-West University, Johannesburg, South Africa), Soenarto Sastrowijoto (Center for Bioethics and Medical Humanities, Faculty of Medicine, Universitas Gadjah Mada, Yogyakarta, Indonesia), Stefano Semplici (Faculty of Philosophy, University of Rome "Tor Vergata," Rome, Italy), Ayman Shabana (Georgetown University School of Foreign Service, Doha, Qatar), Jan Helge Solbakk (Center for Medical Ethics, University of Oslo, Norway), Carol Taylor (Center for Clinical Bioethics/Kennedy Institute of Ethics, Georgetown University, Washington DC, USA), and Luis Vivanco (Platform of Bioethics and Medical Education, Center for Biomedical Research of La Rioja, Logroño, Spain). The production of the Encyclopedia was greatly facilitated by Springer Publishers. First of all, the idea of an Encyclopedia as complementary to the Handbook of Global Bioethics was enthusiastically welcomed by Floor Oosting, Executive Editor Applied Ethics, and Michael Hermann, Senior Editor for major reference works. The practical work was facilitated by Annalea Manalili, Associate Editor, who set up an efficient website making editorial management much easier. Special thanks go to Saskia Ellis, Editorial Assistant. She kept track of the flow of manuscripts and made sure that all contributions were managed efficiently and carefully. It has been a pleasure to work with her. Undoubtedly, I have forgotten to thank many others who have been involved in the process of publishing. Finally, I would like to thank the colleagues who contributed to the Encyclopedia. Thanks to their efforts and time, the final product could be published, so that ultimately we have 358 entries covering most of the relevant subjects in the expanding area of global bioethics. Henk ten Have Editor-in-Chief About the Editor Henk ten Have studied medicine and philosophy at Leiden University, the Netherlands. He received his medical degree in 1976 from Leiden University and his philosophy degree in 1983. He worked as a researcher in the Pathology Laboratory, University of Leiden (1976–1977), as a practicing physician in the Municipal Health Services, City of Rotterdam (1978–1979), and as a Professor of Philosophy in the Faculty of Medicine and Faculty of Health Sciences, University of Limburg, Maastricht (1982–1991). From 1991, he was a Professor of Medical Ethics and the Director of the Department of Ethics, Philosophy and History of Medicine in the University Medical Centre Nijmegen, the Netherlands. In September 2003, he joined UNESCO as Director of the Division of Ethics of Science and Technology. Since July 2010, he is Director of the Center for Healthcare Ethics at Duquesne University in Pittsburgh, USA (see: www.duq.edu/chce). He is also Adjunct Professor at King Saud bin Abdulaziz University for Health Sciences, Riyadh, Saudi Arabia. Henk ten Have serves on numerous editorial boards. He is editor-in-chief of Medicine, Health Care and Philosophy. He was co-founder and secretary of the European Society for Philosophy of Medicine and Health Care. He published Medische Ethiek (with Ruud ter Meulen and Evert van Leeuwen; 4th revised edition 2013), a textbook for medical curricula used in medical schools in the Netherlands. His other books include: Palliative Care in Europe. Concepts and Policies (Amsterdam, the Netherlands; IOS Press; 2001), Bioethics in a European Perspective (Dordrecht, the Netherlands; Kluwer Academic Publishers; 2001), The Ethics of Palliative Care. European Perspectives (Buckingham, UK; Open University Press; 2002), Ethics and Alzheimer Disease (Johns Hopkins University Press, Baltimore, 2004), and Death and Medical Power. An Ethical Analysis of Dutch Euthanasia Practice (Open University Press, 2005). At UNESCO, he has been involved in a wide range of international activities in bioethics, such as capacity building on the basis of the Universal Declaration of Bioethics and Human Rights, particularly the establishment of national bioethics committees and the promotion of ethics teaching (with a priority for Africa and the Arab Region). With UNESCO he published Environmental Ethics and International Policy (Paris, 2006), Nanotechnologies, Ethics and Politics (Paris, 2007), and The UNESCO Universal Declaration on Bioethics and Human Rights. Background, principles and application (Paris, 2009). In 2011, he published as editor together with Ruth Chadwick and Eric Meslin The SAGE Handbook of Health Care Ethics: Core xi xii and Emerging Issues (Sage Handbook series, London, SAGE Publications). In the same year his book in Dutch was published: Bioethiek zonder grenzen. Mondialisering van gezondheid, ethiek en wetenschap (Bioethics without Borders. Globalisation of health, ethics and science; Valkhof Pers, Nijmegen, the Netherlands). His most recent publications are the Handbook of Global Bioethics (co-editor with Bert Gordijn, published in 4 volumes by Springer in 2014) and Bioethics Education in a Global Perspective (Springer, 2015). Currently, he is editor-in-chief of the new International Journal of Ethics Education. He is also editor of the new book series Advancing Global Bioethics, published by Springer Publishers. He established the International Association for Education in Ethics in 2012, and serves as its Executive Secretary. In 2016, he will publish two books: Global Bioethics; An Introduction and Vulnerability: Challenging Bioethics (both with Routledge, UK). Dr. ten Have is a member of the Real Academia Nacional de Medicina (in Madrid, Spain) as well as of the Royal Dutch Academy of Science (in Amsterdam, the Netherlands). From 2007 to 2010, he was an Honorary Research Professor in the School of Philosophy, University of Tasmania, Australia. In March 2008, he was awarded the title of Doctor Honoris Causa by the Medical University of Pleven in Bulgaria. In September 2008, he received the Oscar M. Ruebhausen Visiting Professorship, Department of Bioethics, Case Western Reserve University in Cleveland. In September 2008, he was awarded the Ethos Prize for Bioethics, sponsored by Calouste Gulbenkian Foundation, Lisbon, Portugal. In 2015, he was appointed as "Lifetime Honorary Member" of the Bangladesh Bioethics Society. About the Editor Contributors G. John M. Abbarno D'Youville College, Buffalo, NY, USA Toshitaka Adachi DMH, Kameda College of Health Sciences, Kamogawashi, Chiba-ken, Japan Michael O. S. Afolabi Center for Healthcare Ethics, Duquesne University, Pittsburgh, PA, USA Global Initiative Center for Scientific Research and Development, Ibadan, Nigeria Adeshina Afolayan Department of Philosophy, University of Ibadan, Ibadan, Nigeria Leila Afshar Medical Ethics Department, Shahid Beheshti University of Medical Sciences, Tehran, Iran George J. Agich Austin, TX, USA Bowling Green State University, Bowling Green, OH, USA Cíntia Águas Institute of Bioethics of the Portuguese Catholic University, Lisbon, Portugal Christopher Agulanna Department of Philosophy, Faculty of Arts, University of Ibadan and West African Bioethics Training Program, University of Ibadan, Ibadan, Nigeria Ayesha Ahmad University College London, London, UK Akira Akabayashi Department of Biomedical Ethics, University of Tokyo Graduate School of Medicine, Tokyo, Japan Muge Akpinar-Elci Old Dominion University, Norfolk, VA, USA Aslıhan Akpınar Department of History of Medicine and Medical Ethics, Faculty of Medicine, Hacettepe University, Ankara, Turkey Ghiath Alahmad King Abdullah International Medical Research Center (KAIMRC), King Saud Bin Abdulaziz University for Health Sciences, King Abdulaziz Medical City, Riyadh, Saudi Arabia xiii xiv Silviya Aleksandrova-Yankulovska Department of Medical Ethics, Management of Health Care and Information Technologies, Medical University of Pleven, Pleven, Bulgaria Allen Andrew Alvarez Programme for Applied Ethics, Department of Philosophy and Religious Studies, Norwegian University of Science and Technology, Trondheim, Norway Elinor Amit Harvard Medical School, Harvard University, Boston, MA, USA Edmond J. Safra Center for Ethics, Harvard University, Cambridge, MA, USA Roberto Andorno Institute of Law, University of Z€urich, Z€urich, Switzerland John I. Anetor Department of Chemical Pathology, College of Medicine, University of Ibadan, Ibadan, Nigeria Peter Angelos The University of Chicago, Chicago, IL, USA Marco Annoni National Research Council (CNR), Rome, Italy Institute of Biomedical Technologies (ITB), Rome, Italy Fondazione Umberto Veronesi, Milan, Italy Kiarash Aramesh Center for Healthcare Ethics, Duquesne University, Pittsburgh, PA, USA Medical Ethics and History of Medicine Research Center, Tehran University of Medical Sciences, Tehran, Iran Joana Araújo Institute of Bioethics, Catholic University of Portugal, Porto, Portugal Berna Arda Faculty of Medicine, Department of History of Medicine and Ethics, Ankara University, Sihhiye Ankara, Turkey Hitoshi Arima Graduate School of Urban, Social, and Cultural Studies, Yokohama City University, Yokohama, Japan Ronald C. Arnett Duquesne University, Pittsburgh, PA, USA Robin Attfield Cardiff School of English, Communication and Philosophy, Cardiff University, Cardiff, Wales, UK Mark Aulisio Department of Bioethics, Case Western Reserve University School of Medicine, Cleveland, OH, USA Center for Biomedical Ethics, MetroHealth Medical Center, Cleveland, OH, USA Julie Aultman Northeast Ohio Medical University, Rootstown, OH, USA Ademola Azeez Chemical Pathology Department, University College Hospital, Ibadan, Nigeria Contributors Contributors xv David Badcott Centre for Applied Ethics, School of English, Communication and Philosophy, Cardiff University, Cardiff, UK Alireza Bagheri School of Medicine, Department of Medical Ethics, Tehran University of Medical Sciences, Tehran, Iran Clive Baldwin Canada Research Chair in Narrative Studies, St. Thomas University, Fredericton, NB, Canada Marta Dias Barcelos CHAM, Portuguese Centre for Global History, Faculty of Social Science and Humanities, New University of Lisbon, University of the Azores, Lisbon, Portugal Yechiel Michael Barilan Department of Medical Education, Sackler School of Medicine, Tel Aviv University, Tel Aviv-Yafo, Israel Ewa Bartnik Faculty of Biology, University of Warsaw and Institute of Biochemistry and Biophysics, Polish Academy of Sciences, Warsaw, Poland Michele Battle-Fisher Boonshoft School of Medicine, Wright State University, Kettering, Ohio, USA Stéphane Bauzon Department STF/macro area School of Law, University of Rome Tor Vergata, Rome, Italy Tom L. Beauchamp Philosophy Department and Kennedy Institute of Ethics, Georgetown University, Washington, DC, USA Carl Becker Kokoro Research Center, Kyoto University, Kyoto, Japan Kevin G. Behrens Steve Biko Centre for Bioethics, University of the Witwatersrand, Johannesburg, South Africa Vicente Bellver Department of Philosophy of Law, Universitat de València, Valencia, Spain Lazare Benaroyo University of Lausanne, Lausanne, Switzerland Solomon R. Benatar Faculty of Health Sciences, Bioethics Centre, University of Cape Town, Cape Town, South Africa Belinda Bennett School of Law, Queensland University of Technology, Brisbane, Australia Cécile M. Bensimon Canadian Medical Association, Ottawa, ON, Canada Edward J. Bergman Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA Sharon Bessell Crawford School of Public Policy, The Australian National University, Canberra, Australia Paul Biegler Centre for Human Bioethics, Monash University, Clayton, VIC, Australia Nikola Biller-Andorno Institute of Biomedical Ethics and History of Medicine, University of Z€urich, Z€urich, Switzerland xvi Alina Bodea University of Pittsburgh, Pittsburgh, PA, USA Marianne Boenink Department of Philosophy, Faculty of Behavioural and Management Sciences, University of Twente, Enschede, The Netherlands Giovanni Boniolo Dipartimento di Scienze Biomediche e Chirurgico Specialistiche, Università di Ferrara, Ferrara, Italy Institute for Advanced Study, Technische Universit€at M€unchen, M€unchen, Germany Ana Borovecki Andrija Stampar School of Public Health, School of Medicine, University of Zagreb, Zagreb, Croatia Lea Cheyney Brandt Missouri Health Professional Consortium, Occupational Therapy Assistant Program, University of Missouri Center for Health Ethics, Columbia, MO, USA Alexandra A. Brewis School of Human Evolution and Social Change, Arizona State University, Tempe, AZ, USA Philip Brey University of Twente, Enschede, The Netherlands Gillian Brock Philosophy, University of Auckland, Auckland, New Zealand Bert Broeckaert KU Leuven, Leuven, Belgium Cheryl M. L. Brown Office of the Director of Public Prosecution, Kingston, Jamaica Margherita Brusa Department of Medical Education, Sackler School of Medicine, Tel Aviv University, Tel Aviv-Yafo, Israel Daniel Z. Buchman University Health Network, Toronto, Canada Joint Centre for Bioethics, University of Toronto, Toronto, Canada Thomas Buford Furman University, Greenville, SC, USA Katherine Burke Institute of Medical Genetics, School of Medicine, Cardiff University, Cardiff, Wales, UK Philip J. Candilis Department of Behavioral Health, Saint Elizabeths Hospital, Washington, DC, USA Miguel Antonio Sánchez Cárdenas Nursing Faculty, El Bosque University, Bogotá D.C, Colombia Lindsay B. Carey Palliative Care Unit, School of Psychology and Public Health, La Trobe University, Melbourne, VIC, Australia Terry Carney Faculty of Law, The University of Sydney, Sydney, Australia Ana Sofia Carvalho Centre for Research in Bioethics of the Institute of Bioethics, Catholic University of Portugal, Porto, Portugal Anita Catlin Consultant, Research and Ethics, Pope Valley, CA, USA Contributors Contributors xvii Mark Cenite Wee Kim Wee School of Communication and Information, Nanyang Technological University, Singapore Rhyddhi Chakraborty Department of Humanities and Social Sciences, Indian Institute of Technology Kharagpur, Kharagpur, West Bengal, India Georges Chapouthier Université Paris 1 Panthéon-Sorbonne, CNRS, ENS UMR 8590 IHPST – Institut d'Histoire et de Philosophie des Sciences et des Techniques, Paris, France Kate Chatfield University of Central Lancashire, Preston, Lancashire, UK Justin Chen Depression Clinical and Research Program, Department of Psychiatry, Massachusetts General Hospital, Boston, MA, USA Frank A. Chervenak Weill Medical College of Cornell University, New York, NY, USA Roland Chia Trinity Theological College, Singapore, Singapore Jacqueline J. L. Chin Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore Byung In Choe Department of Institutional Review and Research Ethics, Nicholas Cardinal Cheong Graduate School for Life, The Catholic University of Korea, Seoul, South Korea M. Murat Civaner Department of Medical Ethics, Uludag University School of Medicine, Bursa, Turkey David Clark School of Interdisciplinary Studies, University of Glasgow, Glasgow, UK Angus Clarke Institute of Medical Genetics, School of Medicine, Cardiff University, Cardiff, Wales, UK Carl Cohen The University of Michigan, Ann Arbor, MI, USA Jeffrey Cohen Social Policy Research Centre, Faculty of Arts and Social Sciences, University of New South Wales, Sydney, NSW, Australia Raphael Cohen-Almagor Politics, University of Hull, Hull, UK Stephen Coleman School of Humanities and Social Sciences, University of New South Wales, Canberra, Australia Military Ethics at the Australian Centre for the Study of Armed Conflict and Society, University of New South Wales, Canberra, Australia Nikki Coleman School of Humanities and Social Sciences, University of New South Wales, Canberra, Australia Yali Cong Institute for Medical Humanities, Peking University, Haidian District, Beijing, China Steven Coughlin Department of Epidemiology, Rollins School of Public Health, Emory University, Atlanta, GA, USA xviii Andrew Courtwright Department of Pulmonary and Critical Care Medicine, Brigham and Women's Hospital and Institute for Patient Care, Massachusetts General Hospital, Boston, MA, USA G. K. D. Crozier Department of Philosophy, Laurentian University, Sudbury, ON, Canada Anthony J. Culyer University of York, York, UK University of Toronto, Toronto, ON, Canada Abdallah S. Daar Dalla Lana School of Public Health, University of Toronto, Toronto, Canada Stellenbosch Institute for Advanced Study (STIAS), Wallenberg Research Centre at Stellenbosch University, Stellenbosch, South Africa Michel Daher Saint George Hospital UMC, University of Balamand (UOB), Beirut, Lebanon Marion Danis Department of Bioethics, National Institutes of Health, Bethesda, MD, USA Menno de Bree Institute for Medical Education, University Medical Center Groningen, Groningen, The Netherlands Leonardo de Castro Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore Inmaculada de Melo-Martín Department of Medicine, Division of Medical Ethics, Weill Cornell Medical College – Cornell University, New York, NY, USA Wim Dekkers Scientific Institute for Quality of Healthcare (IQ), Radboud University Medical Center, Nijmegen, The Netherlands Roberto Delgado-Bolton Education Committee Board, San Pedro Hospital, Logroño, Spain Department of Diagnostic Imaging (Radiology) and Nuclear Medicine, San Pedro Hospital – Center for Biomedical Research of La Rioja (CIBIR), Logroño, Spain University of La Rioja, Logroño, Spain Amaboo Dhai Steve Biko Centre for Bioethics, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa Kris Dierickx Centre for Biomedical Ethics and Law, KU Leuven, Leuven, Belgium Nenad Dikic Faculty of Physical Education and Sports Management, Singidunum University, Belgrade, Serbia Kevin M. Dirksen Providence Center for Health Care Ethics, Providence Health and Services, Portland, OR, USA Contributors Contributors xix Nenad Djurdjevic Faculty of Law, University of Kragujevac, Kragujevac, Serbia Piergiorgio Donatelli Sapienza Università di Roma, Rome, Italy Nigel Dower Department of Philosophy, School of History, Divinity and Philosophy, University of Aberdeen, Aberdeen, UK Anne-Marie Duguet UMR/INSERM Unit 1027, University Paul Sabatier Faculté de Médecine, Toulouse, France Peter Duncan Department of Education and Professional Studies, King's College London, London, UK Mark Earnest University of Colorado, Denver, CO, USA Gary Edwards Center for Healthcare Ethics, Duquesne University, Pittsburgh, PA, USA Hans-Jörg Ehni Institute for Ethics and History of Medicine, University of T€ubingen, T€ubingen, Germany Marleen Eijkholt Davidson College, Davidson, North Carolina, USA Carolinas Medical Center, Charlotte, North Carolina, USA Kiran Ejaz Journal of Pakistan Medical Association, Karachi, Sindh, Pakistan Perihan Elif Ekmekçi Department of Ministry of Health, Ankara, Turkey Omur Cinar Elci St. George's University, St. George, WI, Grenada Bernice S. Elger Institute for Biomedical Ethics, University of Basel, Basel, Switzerland Mervat E. Elgharieb Department of Ophthalmology, Faculty of Medicine, Suez Canal University, Ismailia, Egypt International Research Ethics, University of Maryland, Baltimore, MD, USA Technical Office of RDIC–BEST, UNESCO, ASRT, Cairo, Egypt Research Ethics Council, Academy of Scientific Research and Technology (ASRT), Cairo, Egypt Deni Elliott Department of Journalism and Media Studies, University of South Florida, St. Petersburg, FL, USA Mylan Engel Jr. Northern Illinois University, DeKalb, IL, USA Sylvie Epelboin Assisted Reproductive Techniques (ART) Unit, Department of Gynecology, Obstetrics and ART, Hôpitaux Universitaires Paris Nord Val de Seine, Paris, France Paris 7–Diderot University, Paris, France Eric J. Ettema Department of Medical Humanities, VU University Medical Center, Amsterdam, The Netherlands xx Amitai Etzioni The George Washington University, Washington, DC, USA Nicholas Evans Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA Guillermo Fajardo-Ortiz School of Medicine, Universidad Nacional Autónoma de México, México D.F., Mexico Mahmoud F. Fathalla Department of Obstetrics and Gynaecology, Assiut University, Assiut, Egypt Thomas Faunce ANU College of Law and College of Medicine, Biology, and the Environment (Joint Appointment), Australian National University, Canberra, ACT, Australia Eli Feiring Health Management and Health Economics, University of Oslo, Oslo, Norway Saulo F. Feitosa Cátedra UNESCO de Bioética da Universidade Brasília, Brasília, Brazil Clemente Maia S. Fernandes São Paulo State University – UNESP, Araraquara, Brazil Kirk Fiereck The Gender, Sexuality, and Women's Studies at Penn, Alice Paul Center for Research on Women, Gender, and Sexuality, School of Arts and Sciences, University of Pennsylvania, Philadelphia, PA, USA Autumn M. Fiester Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA Robin N. Fiore Institute for Bioethics and Health Policy, University of Miami Miller School of Medicine, Miami, FL, USA Simon M. Firestone Asia-Pacific Centre for Animal Health, Faculty of Veterinary and Agricultural Sciences, The University of Melbourne, Parkville, VIC, Australia Celia B. Fisher Fordham University Center for Ethics Education, Bronx, NY, USA Paul Flaman St. Joseph's College, University of Alberta, Edmonton, AB, Canada Véronique Fournier Centre d'ethique Clinique, Hôpital Cochin, Hôpitaux Universitaires Paris Centre, Paris, France Leslie Francis Department of Philosophy and College of Law, University of Utah, Salt Lake City, UT, USA Jaryl Gan Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore Mirko Daniel Garasic Law Faculty, The Edmond J. Safra Center for Ethics, Tel Aviv University, Tel Aviv, Israel Contributors Contributors xxi Alberto Garcia UNESCO Chair in Bioethics and Human Rights, Rome, Italy Jillian Gardner Steve Biko Centre for Bioethics, Faculty of Health Sciences, University of Witwatersrand, Johannesburg, South Africa Sally M. Gardner Deakin University, Melbourne, Australia Volnei Garrafa UNESCO Chair of Bioethics/Faculty of Health Sciences, University of Brasília, Brasília, Brazil Olivier Garraud Université de Lyon/Saint-Etienne, et Institut National de Transfusion sanguine, Paris, France Des Gasper International Institute of Social Studies, Erasmus University Rotterdam, The Hague, The Netherlands Eugenijus Gefenas Department of Medical History and Ethics, Vilnius University, Vilnius, Lithuania Petra Gelhaus Department for Ethics, History and Philosophy of Medicine, University of Muenster, Muenster, Germany Psychiatric Clinics Motala/Mjölby, Region Östergötland, Motala, Sweden Rose Geransar University of Calgary, Calgary, AB, Canada Christine Gilroy University of Colorado, Denver, CO, USA James Giordano Neuroethics Studies Program, Pellegrino Center for Clinical Bioethics, Washington, DC, USA Department of Neurology, Georgetown University Medical Center, Washington, DC, USA Walter Glannon Department of Philosophy, University of Calgary, Calgary, Canada Ronald J. Glanville Biosecurity Advisory Service, Melbourne, Australia Asia-Pacific Centre for Animal Health, Faculty of Veterinary and Agricultural Sciences, The University of Melbourne, Parkville, VIC, Australia Jose Gomez Philosophy Faculty, Universidad Panamericana and CISAV, México D.F., Mexico Michael Gordon Baycrest Health Sciences, University of Toronto, Toronto, ON, Canada Diego Gracia Complutense University of Madrid, Madrid, Spain Ronald Green Dartmouth College, Hanover, NH, USA Selynne Guo University of Toronto, Toronto, ON, Canada Amy M. Haddad Center for Health Policy and Ethics, Creighton University, Omaha, NE, USA xxii Alison J. Hanlon School of Veterinary Medicine, Veterinary Sciences Centre, University College Dublin, Belfield, Dublin 4, Ireland Billie-Jo Hardy Department of Philosophy, McMaster University, Hamilton, Canada Matti H€ ayry Aalto University School of Business, Helsinki, Finland Torsten Heinemann Institute for the Study of Societal Issues, University of California, Berkeley, Berkeley, CA, USA Institute of Sociology, University of Hamburg, Hamburg, Germany Gert Helgesson Karolinska Institutet, Stockholm, Sweden Sirkku K. Hellsten University of Helsinki, Helsinki, Finland University of Dar es Salaam, Dar es Salaam, Tanzania Kristien Hens Department of Philosophy, University of Antwerp, Antwerp, Belgium Friedrich Heubel Akademie f€ur Ethik in der Medizin, Marburg, Germany Rafaela Hillerbrand Institut f€ur Technikfolgenabsch€atzung und Systemanalyse (ITAS), Karlsruher Institut f€ur Technologie (KIT), Karlsruhe, Germany Elisabeta Ioana Hiriscau Department Clinical Ethics, Psychiatric Hospitals of the University Basel, Basel, Switzerland University of Medicine and Pharmacy "Iuliu Hatieganu", Cluj–Napoca, Romania Anita Ho Centre for Biomedical Ethics, National University of Singapore, Singapore, Singapore Centre for Applied Ethics, University of British Columbia, Vancouver, Canada Calvin W. L. Ho Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore The Ethox Centre, Nuffield Department of Population Health, University of Oxford, Oxford, UK Anita Ho Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore Centre for Applied Ethics, University of British Columbia, Vancouver, BC, Canada Willem A. Hoffmann Faculty of Science, Tshwane University of Technology, Pretoria, South Africa Bjørn Hofmann Section for Health, Technology, and Society, University College of Gjøvik, Norway and Centre for Medical Ethics, University of Oslo, Oslo, Norway Contributors Contributors xxiii Heather B. Hogan Whaley Estate Litigation, Toronto, ON, Canada Pamela Holm Advanced Neonatal Nurse Practitioner, Cheadle Hulme, UK Søren Holm School of Law, Centre for Social Ethics and Policy, University of Manchester, Manchester, UK Center for Medical Ethics, HELSAM, University of Oslo, Oslo, Norway Department of Health Science and Technology, Aalborg University, Aalborg, Denmark Soraj Hongladarom Department of Philosophy, Faculty of Arts, Chulalongkorn University, Bangkok, Thailand Claire Hooker Centre for Values, Ethics and the Law in Medicine, University of Sydney, Sydney, Australia Austin R. Horn Rotman Institute of Philosophy, Western University, London, ON, Canada Arif Hossain Bangladesh Bioethics Society, Dhaka, Bangladesh Department of Human Rights, Etrat University, Dhaka, Bangladesh Lin-Ying Hu Regent College, University of British Columbia, Vancouver, Canada Julian C. Hughes Northumbria Healthcare NHS Trust, Policy, Ethics and Life Sciences (PEALS) Research Centre, Newcastle University, Newcastle upon Tyne, UK Rebekah Humphreys School of Cultural Studies, University of Wales, Trinity Saint David, Lampeter, Wales, UK Matthew Hunt McGill University, Montreal, QC, Canada Richard Huxtable Centre for Ethics in Medicine, School of Social and Community Medicine, University of Bristol, Bristol, UK Hiroshi Ihara Department of Psychiatry, Koshigaya Hospital, Dokkyo Medical University, Koshigaya, Saitama, Japan Kai Ilchmann Instituto de Relações Internacionais, Pontifícia Universidade Católica do Rio de Janeiro, Rio de Janeiro, RJ, Brazil Ana S. Iltis Center for Bioethics, Health and Society and Department of Philosophy, Wake Forest University, Winston-Salem, NC, USA Dipo Irele Department of Philosophy, University of Ibadan, Ibadan, Nigeria António Jácomo Centre for Research in Bioethics of the Institute of Bioethics, Catholic University of Portugal, Porto, Portugal Rien M. J. P. A. Janssens Department of Medical Humanities, EMGO, VU Medical Center, Amsterdam, The Netherlands xxiv Fatema Jawad Journal of Pakistan Medical Association, Karachi, Sindh, Pakistan Uffe Juul Jensen Department of Philosophy and History of Ideas, School of Culture and Society, Aarhus University, Aarhus, Denmark Clarence Shole Johnson Department of Philosophy, Middle Tennessee State University, Murfreesboro, TN, USA Rebecca A. Johnson Department of Sociology, Princeton University, Princeton, NJ, USA D. Gareth Jones University of Otago, Dunedin, New Zealand Fabrice Jotterand Department of Health Care Ethics, Regis University, Denver, CO, USA Institute for Biomedical Ethics, University of Basel, Basel, Switzerland Kyu Won Jung School of Law, Hanynag University, Seoul, South Korea Eleni Kalokairinou Department of Philosophy and Education, Aristotle University of Thessaloniki, Thessaloniki, Greece Patrick Kermit Norwegian University of Science and Technology (NTNU) and NTNU Social Research, Trondheim, Norway Sarah E. Ali Khan Centre for Intellectual Property Policy (CIPP), Faculty of Law, McGill University, Montreal, Canada Sharadhuli I. Kimera Faculty of Veterinary Medicine, Department of Veterinary Medicine and Public Health, Sokoine University of Agriculture, Morogoro, Tanzania Gerrit Kimsma Department of Ethics, Philosophy and History of Medicine, Radboud University Nijmegen Medical Center, Nijmegen, The Netherlands Eike-Henner W. Kluge University of Victoria, Victoria, BC, Canada Paul A. Komesaroff Monash University, Melbourne, Australia Michiel Korthals Wageningen University, Wageningen, The Netherlands Free University, Amsterdam, The Netherlands Jaro Kotalik Northern Ontario School of Medicine, Lakehead Care Centre for Health are Ethics, Thunder Bay, ON, Canada Michael H. Kottow Escuela de Salud Pública (School of Public Health), University of Chile, Santiago, Chile Georges Kutukdjian International Bioethics Committee of UNESCO (IBC) (1992–2001), Sub-Commission A, French National Consultative Commission on Human Rights (CNCDH), Paris, France Ivo (Bok-Kyu) Kwon Ewha School of Medicine, Ewha Womans University, Yangcheon-gu, Seoul, South Korea Contributors Contributors xxv Dirk Lanzerath German Reference Centre for Ethics in the Life Sciences (DRZE), University of Bonn, Bonn, Germany Shamima Parvin Lasker Department of Anatomy, MH Samorita Medical College, Dhaka, Dhaka, Bangladesh American University of Sovereign Nations, Scottsdale, AZ, USA Bangladesh Bioethics Society, Dhaka, Bangladesh Asian Bioethics Association, Bangkok, Thailand Gwi Hyang Lee Department of Institutional Review and Research Ethics, Nicholas Cardinal Cheong Graduate School for Life, The Catholic University of Korea, Seoul, South Korea Rita Lee University of Colorado, Denver, CO, USA See Muah Lee JurongHealth, Singapore, Singapore Ng Teng Fong General Hospital, Singapore, Singapore Saw Swee Hock School of Public Health, National University of Singapore, Singapore, Singapore Seow Ting Lee Department of Communications and New Media, National University of Singapore, Singapore Steven P. Lee Hobart and William Smith Colleges, Geneva, NY, USA Jean-Jacques Lefrère Université Paris-Descartes et Institut National de Transfusion sanguine, Paris, France Trudo Lemmens Faculty of Law, University of Toronto, Toronto, ON, Canada Marie-Catherine Letendre Marymount International, Rome, Italy Bioethics International, New York, NY, USA Lyne Létourneau Department of Animal Science, Laval University, Quebec, QC, Canada Evariste B. Likinda Chief of Department of Surgery, University Hospital Centre of Mbandaka, Mbandaka, Equateur, Democratic Republic of the Congo Roberta Springer Loewy General Medicine, Geriatrics and Bioethics, University of California, Davis, Gold River, CA, USA Fernando Lolas Center for Interdisciplinary Studies in Bioethics and Department of Psychiatry, Clinical Hospital, University of Chile, Santiago, Chile Maria Teresa López de la Vieja Philosophy, University of Salamanca, Salamanca, Spain Márk Losoncz Institute for Philosophy and Social Theory, University of Belgrade, Belgrade, Serbia xxvi Kristi Lõuk Centre for Ethics, University of Tartu, Tartu, Estonia Florencia Luna FLACSO-CONICET, Buenos Aires, Argentina Darryl Macer American University of Sovereign Nations, Scottsdale, AZ, USA Fabio Macioce Law, Lumsa University, Rome, Italy Paul Macneill Centre for Values, Ethics and the Law in Medicine, University of Sydney, Sydney, Australia Cheryl C. Macpherson Bioethics Department, St. George's University School of Medicine, St George's, Grenada Marina Maestrutti Département de sociologie/CETCOPRA, Université Paris 1 Panthéon-Sorbonne, Paris, France Manuel Magalhães-Sant'Ana School of Veterinary Medicine, Veterinary Sciences Centre, University College Dublin, Belfield, Dublin 4, Ireland Escola Universitária Vasco da Gama, Coimbra, Portugal Gerard Magill Center for Healthcare Ethics, Duquesne University, Pittsburgh, PA, USA Toivo Maimets Institute of Molecular and Cell Biology, University of Tartu, Tartu, Estonia Mui Hing June Mak Department of Cultural and Religious Studies, The Chinese University of Hong Kong, Hong Kong, SAR, China Pierre Mallia Bioethics Research Programme, Faculty of Medicine and Surgery, University of Malta, Msida, MSD, Malta Adefolarin Malomo Department of Surgery, College of Medicine, University of Ibadan and West African Bioethics Training Program, University of Ibadan, Ibadan, Nigeria Jeff Malpas University of Tasmania, Hobart, TAS, Australia Latrobe University, Bundoora, VIC, Australia Lucinda Manda-Taylor School of Public Health and Family Medicine and Centre for Bioethics in Eastern and Southern Africa (CEBESA), College of Medicine, University of Malawi, Chichiri, Blantyre, Malawi Ray Marks School of Health Sciences and Professional Studies Sciences, York College, City University of New York, New York, NY, USA Department of Health and Behavioral Studies, Teachers College, Columbia University, New York, NY, USA Diana Patricia Martínez Clínica Juan Luis Londoño de La Cuesta, Medellín, Colombia Paula Martinho da Silva Institute of Bioethics, Universidade Católica, Lisbon, Portugal Contributors Contributors xxvii Francis Masiye School of Public Health and Family Medicine and Centre for Bioethics in Eastern and Southern Africa (CEBESA), College of Medicine, University of Malawi, Chichiri, Blantyre, Malawi Department of Medicine, University of Cape Town, Cape Town, South Africa Jude Mutuku Mathooko Global Research Akademik and Mentoring Services, Nakuru, Kenya Karori Mbugua Department of Philosophy and Religious Studies, University of Nairobi, Nairobi, Kenya Laurence B. McCullough Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA Susana Lauraine McCune School of Applied Psychology, Counseling and Family Therapy, Antioch University Seattle, Seattle, WA, USA Jennifer L. McCurdy Department of Health Care Ethics, Regis University, Denver, CO, USA John McMillan Bioethics Centre, University of Otago, Dunedin, New Zealand Michael J. McNamee College of Engineering, Swansea University, Swansea, UK David McPherson Department of Philosophy, Creighton University, Omaha, NE, USA Lewis Mehl-Madrona Coyote Institute, Orono, ME, USA Acadia Hospital, Bangor, ME, USA Eastern Maine Medical Center Family Medicine Residency, Bangor, ME, USA Suzanne Metselaar EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands Thaddeus Metz Philosophy, University of Johannesburg, Auckland Park, South Africa Joseph Mfutso-Bengo School of Public Health and Family Medicine and Centre for Bioethics in Eastern and Southern Africa (CEBESA), College of Medicine, University of Malawi, Chichiri, Blantyre, Malawi Andy Miah School of Environment and Life Sciences, University of Salford, Manchester, UK Jennifer E. Miller Division of Medical Ethics, Department of Population Health, NYU Langone Medical Center, New York, NY, USA Gonzalo Miranda Pontifical Athanaeum Regina Apostolorum, Rome, Italy xxviii Contributors James E. D. Mlangwa Faculty of Veterinary Medicine, Department of Veterinary Medicine and Public Health, Sokoine University of Agriculture, Morogoro, Tanzania Hyojung Mo Seoul National University, College Xenoplantation Research Center, Seoul, Republic of Korea of Medicine, Bert Molewijk Department of Medical Humanities, Free University medical centre (VUmc) EMGO+ (Quality of Care), Amsterdam, The Netherlands Centre for Medical Ethics, Institute of Health and Society, Faculty of Medicine, University of Oslo, Blindern, Oslo, Norway Dominique Monlezun UNESCO Chair in Bioethics and Human Rights, Rome, Italy Keymanthri Moodley Department of Medicine, Centre for Medical Ethics and Law, Stellenbosch University, Cape Town, South Africa Andrew Moore Department of Philosophy, University of Otago, Dunedin, New Zealand Greg Moorlock University of Birmingham, Birmingham, UK Sofia Moratti European University Institute, Florence, Italy Roberto Mordacci Faculty of Philosophy, Università Vita-Salute San Raffaele, Milan, Italy Simon J. More Centre for Veterinary Epidemiology and Risk Analysis, UCD School of Veterinary Medicine, University College Dublin, Dublin, Ireland Maurizio Mori University of Turin, Turin, Italy Charles Ituka Mosimah Boonshoft School of Medicine, Wright State University, Kettering, Ohio, USA Jesús Mosterín Instituto de Filosofía, CSIC (National Research Council), Madrid, Spain Amy Mullin University of Toronto Mississauga, Mississauga, ON, Canada Christian Munthe Department of Philosophy, Linguistics and Theory of Science, University of Gothenburg, Gothenburg, Sweden Saskia Nagel University of Twente, Enschede, The Netherlands Rahul Nayak Department of Bioethics, National Institutes of Health, Bethesda, MD, USA Paul Ndebele Medical Research Council of Zimbabwe, Harare, Zimbabwe M. Patrão Neves Bioethics Research Centre, Bioethics Institute, Catholic University of Portugal, Porto, Portugal Guido Nicolosi Department of Political and Social Sciences, University of Catania, Catania, Italy Contributors xxix Andrea Nicolussi Università cattolica del Sacro Cuore, Milan, Italy Jing-Bao Nie Division of Health Sciences, Bioethics Centre, University of Otago, Dunedin, New Zealand Jessica Nihlén Fahlquist Philosophy Department, TU Delft, Delft, The Netherlands Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden Nico Nortjé Faculty of Community and Health, University of the Western Cape, Cape Town, South Africa Per Nortvedt Center for Medical Ethics, Institute of Health and Society, Faculty of Medicine, University of Oslo, Oslo, Norway Rui Nunes Faculty of Medicine, University Porto, Porto, Portugal Herman Nys Centre for Biomedical Ethics and Law, KU Leuven, Leuven, Belgium Temidayo Ogundiran Department of Surgery, College of Medicine, University of Ibadan and West African Bioethics Training Program, University of Ibadan, Ibadan, Nigeria Dónal P. O'Mathúna School of Nursing and Human Sciences, Dublin City University, Dublin, Ireland Chikezie Onuoha Newmaninstitutet, Uppsala, Sweden SpringAid International Development Organization, Owerri, Nigeria Jean-Claude Osselaer Transfusion InterrÕgionale CRS SA, Epalinges, Vaud, Switzerland Peter Ikechukwu Osuji Center for Healthcare Ethics, Duquesne University, Pittsburgh, PA, USA Laura Palazzani Lumsa University, Rome, Italy Flávio R. L. Paranhos Goiania, Brazil Jan Payne Charles University, Prague, Czech Republic Ana Lucía Noreña Peña Department of Nursing, Faculty of Health Sciences, University of Alicante, Alicante, Valencian Community, Spain Joseph J. Pear Department of Psychology, University of Manitoba, Winnipeg, MB, Canada Renzo Pegoraro Fondazione Lanza, Padua, Italy Antonio Pele PUC Rio University, Rio de Janeiro, Brazil Corine Pelluchon University of Franche-Comté, Besançon, France Filimon Peonidis Department of Philosophy, Aristotle University of Thessaloniki, Thessaloniki, Greece xxx Adriano Pessina Ordinario di Filosofia Morale, Dipartimento di Filosofia, Direttore del Centro di Ateneo di Bioetica, Università Cattolica, Milan, Italy Leo Pessini San Camillus University Center, Sao Paulo, Brazil Kakuk Péter Department of Behavioural Sciences, Faculty of Public Health, University of Debrecen, Debrecen, Hungary Carlo Petrini Bioethics Unit, Istituto Superiore di Sanità (Italian National Institute of Health), Rome, Italy Ann-Christin Posten Edmond J. Safra Center for Ethics, Harvard University, Cambridge, MA, USA John Pringle McGill University, Montreal, QC, Canada Gavin Rae Department of Philosophy, American University in Cairo, Cairo, Egypt Ahmed Ragaa A. Ragab International Islamic Center for Population Studies and Research, Al-Azhar University, Cairo, Egypt Daryl Ramai Bioethics Department, St. George's University School of Medicine, St George's, Grenada Hugo S. Ramirez Garcia Universidad Panamericana Campus Mexico, Mexico City, Mexico Oliver Rauprich Institute for Ethics, History, and Theory of Medicine, Ludwig-Maximilian-University Munich, Munich, Germany Frederic G. Reamer School of Social Work, Rhode Island College, Providence, RI, USA Massimo Reichlin Faculty of Philosophy, San Raffaele University, Milan, Italy Andreas Reis Global Health Ethics, World Health Organization, Geneva, Switzerland Stella Reiter-Theil Department Clinical Ethics, Psychiatric Hospitals of the University Basel, Basel, Switzerland Michel Renaud Faculty of Humanities and Social Sciences, Lisbon New University, Lisbon, Portugal Jacob Dahl Rendtorff Department of Communication, Business and Information Technologies, Roskilde University, Roskilde, Denmark David B. Resnik Bioethics, National Institute of Environmental Health Sciences, National Institutes of Health, Research Triangle Park, NC, USA Riaan Rheeder Unit for the Development of Reformed Theology, NorthWest University, Potchefstroom, South Africa Mónica Rincón Physical Medicine and Rehabilitation Department, Fundación Cardioinfantil Instituto de Cardiología, Bogotá, Colombia Contributors Contributors xxxi Michael Robertson Centre for Values, Ethics and the Law in Medicine, University of Sydney, Sydney, Australia Karina Robles-Rivera School of Medicine, Autónoma de México, México D.F., Mexico Universidad Nacional Sabine Roeser Philosophy Department, TU Delft, Delft, The Netherlands Bernard E. Rollin Department of Philosophy, Colorado State University, Fort Collins, CO, USA John Rossi Department of Community Health and Prevention, Drexel University School of Public Health, Philadelphia, PA, USA Joanna Różyńska Institute of Philosophy, University of Warsaw, Warsaw, Poland Michael Ruse Department of Philosophy, Florida State University, College of Arts and Sciences, Tallahassee, FL, USA Stephan Sahm Institute for History and Ethics in Medicine, Goethe–University, Frankfurt, Germany Medical Clinic I, Ketteler Hospital, Offenbach, Germany Judit Sándor Central European University, Budapest, Hungary Aiko Sawada The University of Shiga Prefecture, Hikone, Shiga, Japan Abha Saxena Global Health Ethics, World Health Organization, Geneva, Switzerland Linda S. Scheirton School of Pharmacy and Health Professions, Occupational Therapy Doctoral Program, Center for Health Policy and Ethics, Creighton University, Omaha, NE, USA Joseph G. Schenker Department of Obstetrics and Gynecology, Hadassah Medical Centre, Hebrew University, Jerusalem, Israel Jann E. Schlimme Charité Universit€atsmedizin Berlin, Berlin, Germany Sally Scholz Philosophy Department, Villanova University, Villanova, PA, USA Paul Schotsmans Centre for Biomedical Ethics and Law, KU Leuven, Leuven, Belgium Fermin Roland Schramm National School of Public Health/Oswaldo Cruz Foundation, Rio de Janeiro, Brazil Michael J. Selgelid Centre for Human Bioethics; School of Philosophical, Historical and International Studies, Monash University, Clayton, VIC, Australia Stefano Semplici Business, Government, Philosophy Studies, University of Rome "Tor Vergata", Rome, Italy xxxii Mônica da Costa Serra São Paulo State University – UNESP, Araraquara, Brazil Nicholas Shackel Cardiff University, Cardiff, UK Oxford Uehiro Centre for Practical Ethics, University of Oxford, Oxford, UK Carmel Shalev Department of Reproduction and Society, International Center for Health, Law and Ethics, Haifa University, Haifa, Israel Virginia A. Sharpe Georgetown University, Center for Clinical Bioethics and Veterans Health Administration, National Center for Ethics in Health Care, Washington, DC, USA Rhonda Shaw Victoria University of Wellington, Wellington, New Zealand Gil Siegal University of Virginia School of Law, Charlottesville, VA, USA Center for Health Law, Bioethics and Health Policy Ono Academic College, Kiryat Ono, Israel Margarida Silvestre Institute of Bioethics, Catholic University of Portugal, Porto, Portugal Institute of Bioethics, Catholic University of Portugal, Lisboa, Portugal Coimbra Hospital and Universitary Centre, Coimbra, Portugal Faculty of Medicine, University of Coimbra, Coimbra, Portugal Kadri Simm Institute of Philosophy and Semiotics, University of Tartu, Tartu, Estonia Jacques Simpore Department of Biochemistry/Microbiology/Molecular Biology, Biomolecular Research Centre Pietro Annigoni (CERBA)/ LABIOGENE, University of Ouagadougou, Ouagadougou, Burkina Faso Saint Thomas D'Aquin University (USTA), Ouagadougou, Burkina Faso Sergio Sismondo Queen's University, Kingston, ON, Canada Michael Sleasman The Center for Bioethics and Human Dignity, Trinity International University, Deerfield, IL, USA Anne Slowther Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, UK Anna Smajdor University of East Anglia, Norwich, UK Jeanne Snelling Bioethics Centre, University of Otago, Dunedin, New Zealand Jan Helge Solbakk Centre for Medical Ethics, Faculty of Medicine, Institute of Health and Society, University of Oslo, Oslo, Norway Margaret Somerville Centre for Medicine, Ethics and Law, McGill University, Montreal, QC, Canada Contributors Contributors xxxiii Carlos Alberto Soto-Aguilera School of Medicine, Universidad Nacional Autónoma de México, México D.F., Mexico Marta Spranzi University of Versailles St-Quentin-en-Yvelines, Center for Clinical Ethics, Cochin Hospital, Paris, France Michèle Stanton-Jean Centre de Recherche en Droit Public, Université de Montréal, Montreal, QC, Canada Norbert Steinkamp Scientific Institute for Quality of Healthcare (IQ healthcare), Nijmegen, The Netherlands Nicola Stingelin-Giles Institute for Biomedical Ethics, University of Basel, Basel, Switzerland Alexander I. Stingl Research Faculty, Center for Science, Technology, and Society, Drexel University, Philadelphia, PA, USA Institut f€ur Allgemeinmedizin, Universit€atsklinik, Friedrich–Alexander Universit€at Erlangen–N€urnberg, Erlangen, Germany Joseph Straus NIPMO–UNISA Chair for Intellectual Property and Innovation, University of South Africa (UNISA), Pretoria, South Africa Max Planck Institute for Innovation and Competition, Munich, Germany Judi F. Sture Bradford Disarmament Research Centre, University of Bradford, Bradford, UK Fredrik Svenaeus Centre for Studies in Practical Knowledge, Södertörn University, Huddinge, Sweden Norman K. Swazo Department of Political Science and Sociology, North South University, Dhaka, Bangladesh Peter Sy Department of Philosophy, University of the Philippines, Quezon City, Philippines Michael Cheng-tek Tai Chungshan Medical University, Taichung, Taiwan Ádám Takács Atelier Department of European Social Sciences and Historiography, Eötvös Loránd University, Budapest, Hungary Tuija Takala Aalto University School of Business, Helsinki, Finland University of Helsinki, Helsinki, Finland Godfrey B. Tangwa Department of Philosophy, Cameroon Bioethics Initiative (CAMBIN)/University of Yaounde 1, Yaounde, Cameroon Martha Tarasco Universidad Anáhuac México Norte, México, D.F., Mexico Anita J. Tarzian Baltimore School of Nursing and UM Carey School of Law, University of Maryland, Baltimore, MD, USA Carol Taylor School of Nursing and Health Studies and Kennedy Institute of Ethics, Georgetown University, Washington, DC, USA xxxiv Carla Teixeira Centre for Research in Bioethics of the Institute of Bioethics, Catholic University of Portugal, Porto, Portugal Santo António Hospital, Hospital Centre of Porto, Porto, Portugal Joseph Tham Regina Apostolorum University, Rome, Italy Janna Thompson Department of Politics and Philosophy, La Trobe University, Melbourne, VIC, Australia Jean-Daniel Tissot Transfusion InterrÕgionale CRS SA, Epalinges, Vaud, Switzerland Leila Toiviainen University of Tasmania, Hobart, Australia Christopher Tollefsen University of South Carolina, Columbia, SC, USA Rabee Toumi Center for Healthcare Ethics, Duquesne University, Pittsburgh, PA, USA John F. Tuohey Providence Center for Health Care Ethics, Providence Health and Services, Portland, OR, USA Ambros Uchtenhagen Swiss Research Institute for Public Health and Addiction, Zurich University, Zurich, Switzerland Philip Ogochukwu Ujomudike Department of Philosophy and Religious Studies, Faculty of Humanities, Social and Management Sciences, [FHMSS] Federal University, Wukari, Taraba, Nigeria Paweł Łuków Institute of Philosophy, University of Warsaw, Warsaw, Poland Yesim Isil Ulman School of Medicine, Department of History of Medicine and Ethics, Acibadem University, Atasehir-Istanbul, Turkey Solomon Umukoro Department of Pharmacology and Therapeutics, College of Medicine, University of Ibadan, Ibadan, Nigeria Carlos Herrera Vacaflor University of Toronto, Toronto, ON, Canada Ibo van de Poel TU Delft, Delft, The Netherlands Evert van Leeuwen Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands Gert Jan van der Wilt Radboud Institute for Health Sciences, Radboud University Medical Centre, Nijmegen, The Netherlands Anton van Niekerk Centre for Applied Ethics, Stellenbosch University, Matieland, South Africa Vina Vaswani Department of Forensic Medicine, Centre for Ethics, Yenepoya University, Deralakatte, Mangalore, Karnataka, India Claude Vergès Universidad de Panamá and Hospital del Niño, Panama, Republic of Panama Contributors Contributors xxxv Alan I. Vicenteño-León School of Medicine, Universidad Nacional Autónoma de México, México D.F., Mexico Susana Maria Vidal Bioethics and Ethics of Sciences, Programme Specialist, Social and Human Sciences, UNESCO Bioethics and Ethics of Science Programme for Latin America and the Caribbean, UNESCO Montevideo Office, Montevideo, Montevideo, Uruguay Luis Vivanco Platform of Bioethics and Medical Education, Center for Biomedical Research of La Rioja (CIBIR), Logroño, Spain Area of Health, Nutrition and Bioethics, Ibero–American University Foundation (FUNIBER), Barcelona, Spain Faculty of Health Sciences, European University of the Atlantic, Santander, Spain Teck-Chuan Voo Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore Lance Wahlert Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA The Gender, Sexuality, and Women's Studies at Penn, Alice Paul Center for Research on Women, Gender, and Sexuality, School of Arts and Sciences, University of Pennsylvania, Philadelphia, PA, USA Department of English, Cinema Studies at Penn, School of Arts and Sciences, University of Pennsylvania, Philadelphia, PA, USA Simon Walker Division of Health Sciences, Bioethics Centre, University of Otago, Dunedin, New Zealand Douglas Walton Centre for Research on Reasoning, Argumentation and Rhetoric, University of Windsor, Windsor, ON, Canada Tenzin Wangmo Institute for Biomedical Ethics, University of Basel, Basel, Switzerland Darlene Fozard Weaver Duquesne University, Pittsburgh, PA, USA James Weber Duquesne University, Pittsburgh, PA, USA Charles Weijer Rotman Institute of Philosophy, Western University, London, ON, Canada Jos V. M. Welie Creighton University, Omaha, NE, USA Mark R. Wicclair Department of Philosophy, West Virginia University, Morgantown, WV, USA Center for Bioethics and Health Law, University of Pittsburgh, Pittsburgh, PA, USA Guy Widdershoven EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands xxxvi Matthew Wilhelm-Solomon African Centre for Migration and Society, University of the Witwatersrand, Johannesburg, South Africa Dick Willems Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands Deborah A. Williams Department of Behavioral Health, Saint Elizabeths Hospital, Washington, DC, USA Deborah L. Williams Mayo Clinic/ASU Obesity Solution, Arizona State University, Tempe, AZ, USA Stephen Wilmot University of Derby, Derby, UK Kathryn E. Wilt Consultant in Healthcare Ethics, Education and Simulation, Pittsburgh, PA, USA Gregor Wolbring Department of Community Health Sciences, Community Rehabilitation and Disability Studies, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada Guangkuan Xie Institute for Medical Humanities, Peking University, Haidian District, Beijing, China Elizabeth Yuko Fordham University Center for Ethics Education, Bronx, NY, USA Haihong Zhang Peking University Health Science Center, Beijing, China Randi Zlotnik Shaul The Hospital for Sick Children, Toronto, ON, Canada Hub Zwart Department of Philosophy, Faculty of Science, Institute for Science, Innovation and Society (ISIS), Radboud University Nijmegen, Nijmegen, The Netherlands Contributors A Abnormality Keywords Gregor Wolbring Department of Community Health Sciences, Community Rehabilitation and Disability Studies, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada Abnormality; Disabled people; People with disabilities; Impaired people; Genetics; Screening; Human enhancement; Women; Heteronormativity Introduction Abstract Abnormality as a concept has been used in many cultures for a long time. Many synonyms and antonyms of abnormality exist. Abnormality is used to judge abilities and morphologies of the human body and other biological entities such as animals and nonliving objects. Behaviors of biological entities from humans to nature are judged as abnormal, as are how people relate to each other and to animals and to nature. The use of abnormality as a judgment raises numerous ethical issues. Who decides what is abnormal? What is a variation, what a deviation? What is an ethical reaction toward abnormality? Who decides what is ethical? What about judgment conflicts on what is abnormal on the local and global level? This entry concludes that there are still unresolved issues of how to use and react to the label of abnormality, unresolved ethical, social, cultural, economic, legal, and other issues that apply to existing and emerging discourses and meanings of abnormality. # Springer International Publishing Switzerland 2016 H. ten Have (ed.), Encyclopedia of Global Bioethics, DOI 10.1007/978-3-319-09483-0 Over 100 synonyms exist for abnormality; some synonyms are classified as synonyms of abnormality in the sense of describing being different from standards or norms such as aberration, anomaly, deformity, deviance, eccentricity, and unnaturalness. Some words are classified as describing congenital abnormality such as congenital defect, congenital malformation, deformity, disability, and mutation. Some synonyms of abnormality are classified under the meaning of backwardness, meaning underdevelopment, such as idiocy, mental deficiency, and mental retardation. Many are clustered under the meaning variation as in different; some are clustered under peculiarity (Roget's 21st Century Thesaurus 2009). Some antonyms for abnormality are conformity, normality, normalness, regularity, sameness, standard, uniformity, and usualness (Roget's 21st Century Thesaurus 2009). Abnormalities can be clustered into two main categories, one being how we judge the human body and its abilities. The second category is 2 linked to the code of behaviors written down in religious, legal, and other documents to give guidance as to which behaviors are normal and expected and which are not. After a brief history covering both categories of abnormality, this entry will focus on bodylinked abnormality. It will then introduce emerging forms of abnormalities followed by engaging with two ethics issues related to abnormality, one being the issue of who decides what is "abnormal" and the second being what to do with the "abnormal." History of Abnormality That so many words are linked to the meaning of abnormality and normality indicates the importance of normal behavior throughout human history. Human history is abundant with examples of certain groups making certain behaviors the norm. Menes (pharaoh of Egypt) establishing codes of conduct for the Egyptian civilization in 3040 B.C., the Mesopotamian Codes of Hammurabi (1754 B.C.), the action of Cyrus the Great (539 B.C.) in Babylon that freed slaves and set the norm of racial equality, and the Universal Declaration of Human Rights (1948) are just some examples of humans as individuals or as a collective setting certain behavior norms. The concept of "natural law" is linked to the reality that people often follow certain unwritten laws. Roman law was based on rational ideas derived from the nature of things. As to the norm of individual rights, there is the Magna Carta from the UK (1215), the French Declaration of the Rights of Man and of the Citizen (1789), and the US Bill of Rights (1791). However, as to the actual use of the term "abnormal," the term "abnormal" appeared first in Western Culture in the nineteenth century to denounce humans who behave in certain ways as medically abnormal. The idea of the normal people displaced the enlightenment ideal of human nature during the nineteenth century. The field of abnormal psychology was formed in the nineteenth century with the German physicians Griesinger and Kraepelin linking abnormal Abnormality behaviors to biological abnormalities and to psychopathology. The medical journal The Lancet that published its first issue in 1823 mentioned the term "abnormality" for the first time in 1847 reporting on the meeting of the Pathology Society of London, UK (Lancet 1847). Since then, the term "abnormality" has been used over 26,333 times in The Lancet. In 1897, the book Sexual Inversion was published in the UK, which describes homosexuality as an inborn abnormality. The first issue of the Journal of Abnormal Psychology appeared in 1906, with the journal still publishing today. The American Psychiatric Association publishes the Diagnostic and Statistical Manual of Mental Disorders (DSM) since 1952. The history of the DSM is one example of how criteria of what is called an abnormality change constantly and how "new" abnormalities are constantly generated. Emerging Abnormalities Medicalization of the Species-Typical Healthy: The New Abnormal Medicalization refers to the process by which up to then "nonmedical" problems become dealt with as "medical" problems. Medicalization of the "healthy" is a dynamic where perfectly healthy persons are made to feel bad about their appearances or functioning. It sells to healthy people the idea that they are sick. "Disease-mongering" is a term employed in the critique of the medicalization of the species-typical healthy (see "▶ Disease Mongering"). The reality of medicalization is acknowledged by many. A recent issue of the Seattle Times mentions that 75 % of the adult U.S. population is labeled as diseased (Kelleher and Wilson 2005). Given that the term "abnormality" is often used for medical conditions for not being healthy, one could say that 75 % of the adult U.S. population is abnormal. Medicalization and the Enhancement Model of Health Increasingly scientific and technological advancements are emerging and envisioned such as genetic manipulations through somatic and Abnormality germ-line genetic interventions and synthetic biology (the design of genomes from the bottom up) and body implant technologies that have the potential to allow humans to have abilities that are not exhibited by humans as of now. For example, a brain machine interface allows humans to thought-control devices linked to a computer. Recently, two humans were connected through a brain-to-brain interface device which allowed one person to control actions of the other person (Trimper et al. 2014). Genetic manipulation of the human genome would allow adding all kinds of abilities to the human body. Some genetic manipulations could lead to enhancements of existing abilities such as being strong. Other genetic manipulations could add totally new abilities to the body; for example, it is proposed to add abilities to the body so it can deal with side effects of climate change (Liao et al. 2012). These emerging developments are accompanied by an emerging social dynamic that expects new abilities from the human body. Indeed, the social movement of transhumanism is based on the idea of evolving human abilities beyond the species-typical (Humanity Plus formerly World Transhumanist Association 2005). Julian Huxley, First DirectorGeneral of UNESCO, used the term "transhumanism" with the meaning of constant improvement of human abilities already in 1957 indicating that transhumanism would lead to a new kind of existence of humans fulfilling the destiny of humans (Huxley 1957). This development raises the question of who of the in-the-moment species-typical people will be reclassified as abnormal, or "not normal," because they do not have the beyond-species-typical body and abilities? Given the existing dynamic of pathologization, the reclassification of many so far species-typical as abnormal will be accompanied if not driven by a change in the meaning of healthy, fitting with the established dynamic of medicalization. The enhancement model of health sees a nonenhanced human body as defective and in need of improvement beyond the speciestypical boundaries; every nonenhanced human being is seen as impaired. Every human, no matter how "medically healthy," in the species-typical sense is defined as limited, defective, impaired, 3 and in need of constant improvement made possible by new technologies (a little like the constant software upgrades we do on our computers). "Medically healthy," in this model, means having obtained maximum (at any given time) human enhancement (improvement) of one's abilities, functions, and body structure beyond speciestypical boundaries (Wolbring 2005, 2010). The enhancement model of health moves the dynamic of medicalization toward perceiving the species-typical body in need of an improvement period. If species-typical is a diseased state, one can justify the field of enhancement medicine where one employs genetic (somatic enhancement, germline enhancement, synthetic biology) and nongenetic (cyborgization) interventions as therapies. The dynamic of labeling something or someone as abnormal comes with various ethical issues. Two main ones are covered below, namely, (a) who decides what and who is abnormal and who has the power to influence the labeling of something as abnormal process and (b) what to do with the abnormal labeled; for example, many abnormal-labeled people such as disabled people feel they are discriminated because their set of abilities is seen as abnormal. The Ethics Issue of Who Decides The very concept of abnormal implies that there is a majority or a powerful group that decides what is seen as normal. Having power allows one also to influence what abilities are seen as essential and how to treat and label people who do not have the "essential" abilities. A lively ethics debate exists around the issue of enhancement beyond the normal, for example, with some denouncing the process but others stating that it should be an obligation (Wolbring 2012) (see also entry "▶ Designer Babies"). Once the process of enhancement is accepted, the question is how one deals with the nonenhanced. This power to influence what abilities are seen as essential is often used to disable the less powerful. Various groups were and still are affected by being labeled as abnormal. In general, the question is who A 4 should be allowed to label? Should anyone be allowed to label? Should everyone have the right to identity self-determination? Is identity selfdetermination a part of autonomy? Should selfidentity security, meaning that one can perceive oneself as one wishes and that one is not forced to accept labels put on oneself by others, be a part of human security? In the same way that labeling someone or something as abnormal has a long history, so has the rejection of the label by the ones labeled. Rejecting One's Label: The Case of Women Women have been labeled for some time. Hysteria was linked up to the nineteenth century to the abnormal movement of the uterus making hysteria a female biological abnormality. This label has been denounced by women for a long time. Men set up the expectation that one has to have the ability of being rational, of being able to act rational. Males decided at the same time that women were not rational. Women have been fighting against being pathologized and seen as inferior to men due to "abnormal" sets of abilities for a long time (see, e.g., Suffragette's fight for women's right to vote in the nineteenth and beginning of the twentieth century in many Western countries (Buechler 1990)). A gendered discussion around ability stereotypes, around which abilities are normal, exists (Appel et al. 2011; Kelso and Brody 2014; Martinot et al. 2012). In Western countries up to recently, many men have felt that it would be abnormal for women to have certain abilities one can obtain through educational means. The idea that it is abnormal for girls getting an education beyond certain levels is still an issue in various places around the world. Rejecting Ones Label: The Case of Disabled People Disabled people are another group that has been and still is experiencing being labeled as abnormal. Indeed, the very term used to define them as a social group depends on the dynamic of having a norm and labeling not fitting the norm as an abnormality. Given the linkage of abnormality to the concept of pathologization, people seen as Abnormality abnormal also obtain labels linked to not being healthy such as patient, impaired, disabled, and diseased and are dealt predominantly within a medical narrative. The medical narrative roots the problem, the "disability," the person encounters in the deviance of the person. Management of the problem of the disabled person or person-to-be (embryo, fetus) is aimed at cure, prevention, or adaptation of the person (e.g., assistive devices) to eliminate or compensate for the abnormality. Medical care and rehabilitation are viewed as the primary issues, and at the political level, the principal response is that of modifying or reforming health care policy. The disabled people's rights movements in the USA and Britain coined the term "ableism" in the 1970s to question and highlight the normative expectations toward species-typical body abilities and the disablement (prejudice and negative treatments) people experience when their body-linked abilities are labeled as "impaired" (as deficient). To give three concrete examples of discourses rejecting the pathologization, the cultural concept of neurodiversity has been discussed since the 1990s questioning the medical deficiency discourse people with certain labels such as autism, Asperger syndrome, attention deficit hyperactivity disorder, bipolar disorder, developmental dyspraxia, dyslexia, epilepsy, and Tourette syndrome are exposed to. Even longer does the discussion exist whether not hearing is a deficiency or a different way of being as people who adhere to the concept of Deaf culture state. Finally, Down syndrome is often used as an example of an undesirable, underperforming characteristic. Alternative narratives exist that state that Down syndrome is not an illness or a genetic defect. "Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition. Down syndrome is not a disease, disorder, defect or medical condition. Down syndrome itself does not require either treatment or prevention" (Canadian Down Syndrome Society 2007). However, in all three cases, the nonmedical, nonabnormal alternative narrative is not accepted as the mainstream narrative. Abnormality Rejecting One's Label: The Case of Heteronormativity In 1886, Krafft-Ebing defined homosexuality as a hereditary degeneration. In 1897, Havelock Ellis and John Addington Symonds published Sexual Inversion, claiming that homosexuality is an inborn abnormality. In 1924, the Society for Human Rights in Chicago became the earliest known gay rights organization in the USA. The first lesbian rights organization in the USA, the Daughters of Bilitis, was established in San Francisco in 1955. The American Psychiatric Association removed homosexuality from its official list of mental disorders in 1973; with other words homosexuality was labeled in the USA until 1973 as a disorder. In China, homosexuality ceased to be classified as a mental disorder in 2001. However, homosexuality is still labeled an abnormal behavior in over 80 countries (blog 2015) (80 countries are listed at http://76crimes. com/76-countries-where-homosexuality-is-illegal/). In 2014, the Uganda Anti-Homosexuality Act was signed into law, for example. Furthermore, even if a country does not define homosexuality as a mental disorder or as an abnormal behavior, that does not mean that groups within a country do not adhere to the abnormality label, and it does not mean that LGBTI people are not treated badly. A controversy was evident around the treatment of LGBTI in Russia in the wake of the 2014 Winter Olympic Games in Sochi (Russia). The Ethics Issue of What to Do with the Abnormal Once someone or something is labeled as abnormal, the question is what to do about it. The Issue of Social Discrimination of the Abnormal-Labeled Humans have a long history in using the power of labeling something or someone as abnormal to negatively influence that someone or something. "Witches," "demons," and other terms were used to label certain people as exhibiting abnormal behaviors in order to treat these people in a negative way (e.g., Christians when the Roman 5 Empire did not accept Christianity; women and men during the Spanish inquisition; the pogroms against Jewish people; people with albinism today in various countries). Disabled people have been for a long time and still are targets of negative treatments, of social discrimination. The UN Convention on the Rights of Persons with Disabilities (United Nations 2007) highlights the many negative social treatments disabled people experience globally. The Issue of Selecting Out With the linkage of the concept of abnormality to the medical field, the assumption is that there has to be a way to quantify and identify and possibly eliminate the abnormality. People labeled as impaired due to not fitting the species-typical ability norm were one main target for negative eugenic practices such as their sterilization to prevent them from having offspring that would have the same "abnormality" (see eugenicsarchive.ca). The elimination of the "impaired" fetus after the detection through prenatal testing and the deselection against embryos that were/are identified as "impaired" after preimplantation diagnostic are two other deselection practices (see also "▶ Designer Babies"). The range of genetic and nongenetic characteristics of humans one can test for is constantly increasing. Ultrasound allows us to test for the sex of the potential offspring and other bodily morphologies. We can test for characteristics that manifest themselves right after birth or later on in life. We can test for predispositions meaning that one might be in "danger" of developing certain characteristics down the road in life. We are constantly searching for genetic explanations for human characteristics and behaviors. Many search, for example, for the gay gene or genetic components of violent behavior with the idea to label the finding as genetic abnormalities. The issue of where to draw a line in detecting and eliminating genetic- and nongenetic-based characteristics of humans has gone on for over 40 years. How are lines drawn and justified in what is permissible/ acceptable and what is not? At the moment, the line is drawn at what can be labeled as a disease. The deselection against A 6 females is, for example, seen as negative. A variety of laws and law proposals exist which prohibit sex selection for "nonmedical reasons." Arguments used to justify the prohibition are diverse. Some are (a) sex selection poses significant threats to the well-being of children and siblings, the children's sense of self-worth, and the attitude of unconditional acceptance of a new child by parents, so psychologically crucial to parenting; (b) sex selection leads to negative consequences for the unwanted sex; (c) sex selection leads to the oppression of the people with the unwanted sex, to social injustice; (d) sex selection is as a form of sex discrimination leading to the enhancement of sex stereotypes, which means that people will have certain expectations toward people with one sex or another; and (e) sex selection leads to designer babies and trivializes the selection procedure leading to the selection of children based on 'cosmetic reasons' (Wolbring 2003). Being gay is labeled as a medical abnormality by many. Some believe that being gay is rooted in the genetic makeup meaning that being gay is a genetic abnormality. As such efforts are going on for some time to identify a gay gene, many do not agree with a test for being gay because they do not see being gay as an abnormality and believe that the search for a gay gene reflects homophobia. The opponents of the search for a gay gene also fear that identification of a gay gene might lead to prenatal genetic tests that might endanger future gay people in certain places. Many of the same arguments used to justify sex selection prohibition are used by people questioning the search for a gay gene. In both cases, the people demanding sex selection prohibition and prohibition of a search for a gay gene draw the line by saying they are not a disease as an argument. With other words, being seen as a disease as an abnormality is the justification for employing deselection techniques. In the discourse around the use of genetic tests, an animal farm philosophy (some are more equal than others) is evident (Wolbring 2004). Many arguments used to justify the prohibition of, for example, sex selection can logically be used to justify the prohibition of selection for or against Abnormality other characteristics such as what people label as impairments. However, if disabled people use the same argument, they are made void by the argument that they do not apply as they only apply to nonmedical characteristics. The article "The Disability Rights Critique of Prenatal Genetic Testing Reflections and Recommendations" (Parens and Asch 1999) outlines the many disagreements between "disabled" and "nondisabled" bioethists on the topic. As such, the issue of medicalization of bodies and ability differences gains more importance because once one is medicalized, one is not part of the same moral and ethical reasoning anymore. The Issue of Generating New Characteristics Increasingly, humans can try to influence the genetic composition of humans not only through negative deselection but through genetic modification of body and reproductive cells to (a) fix genetic realities labeled as genetic abnormalities and (b) add new genetic characteristics to humans. In the case of fixing genetic abnormalities, the issue arises again on what is seen as an abnormality and who has the power to decide. Other questions arise around the practice of adding genetic characteristics to humans: How will people without the enhanced characteristics be perceived? Will they be the new abnormal? Given that abnormal is applied to ever-changing targets, this is an area that still has to play itself out (see also entry "▶ Designer Babies"); however, if enhancements give advantages which are seen by the majority or powerful people as useful and if a given enhancement becomes an expectation, it is reasonable, given the history of use of the term "abnormality," that the ones not having a given enhancement might experience negative treatments and might be labeled as abnormal. Conclusion This entry covered historical and emerging dynamics of labeling someone or something as abnormal and the medical, cultural, social, and some ethical aspects linked to labeling something or someone as abnormal. The entry highlighted Abnormality that what is abnormal and what to do with the abnormal-labeled plays itself out differently in different countries, social settings, and cultures. The entry indicates that we have not solved the problems evident in the discourses around labeling something or someone as abnormal, that there are still unresolved ethical, social, cultural, economic, legal, and other issues that apply to existing and emerging discourses and meanings of abnormality. Cross-References ▶ Ageism ▶ Biology: Ethics of ▶ Children and Ethics ▶ Citizenship ▶ Cultural Diversity ▶ Designer Babies ▶ Disease ▶ Disease Mongering ▶ Education: Assessment ▶ Future Generations ▶ Gene Therapy ▶ Genetic Determinism ▶ Health: Global ▶ Human Dignity ▶ Human Nature ▶ Language Politics ▶ Lifestyles ▶ Risk ▶ Slippery Slope ▶ Tolerance ▶ Values ▶ Vulnerability References Appel, M., Kronberger, N., & Aronson, J. (2011). Stereotype threat impairs ability building: Effects on test preparation among women in science and technology. European Journal of Social Psychology, 41(7), 904–913. Buechler, S. M. (1990). Women's movements in the United States: Woman suffrage, equal rights, and beyond. New Brunswick: Rutgers University Press. Canadian Down Syndrome Society. (2007). Down syndrome redefined. Canadian Down Syndrome 7 Society webpage. Retrieved from http://www.cdss.ca/ information/general-information/what-is-down-syn drome.html. Accessed 15 May 2015. Erasing 76 crimes blog. (2015). 80 countries where homosexuality is illegal. Retrieved from http:// 76crimes.com/76-countries-where-homosexuality-isillegal/. Accessed 15 May 2015. Humanity Plus formerly World Transhumanist Association. (2005). What is transhumanism? Humanity Plus formerly World Transhumanist Association. http:// humanityplus.org/. Accessed 15 May 2015. Huxley, J. (1957). Transhumanism. In New bottles for new wine (pp. 13–17). London: Chatto & Windus. Kelleher, S., & Wilson, D. (2005). Suddenly sick a special report. Seattle Times. Retrieved from http://cmlhope. com/2005/06/27/suddenly-sick-a-special-report-bysusan-kelleher-and-duff-wilson-%EF%BF%BD-june26-june-30-2005/. Accessed 15 May 2015. Kelso, G. A., & Brody, L. R. (2014). Implicit processes and emotions in stereotype threat about women's leadership. In J. Zheng (Ed.), Exploring implicit cognition: Learning, memory, and social cognitive processes: Learning, memory, and social cognitive processes (pp. 118–137). Hershey: IGI Global. Lancet, T. (1847). Pathological Society of London.: Monday, April 5, 1847. – DR. Williams in the chair. The Lancet, 49(1233), 409–411. doi:10.1016/S01406736(02)87178-1. Liao, S. M., Sandberg, A., & Roache, R. (2012). Human engineering and climate change. Ethics, Policy & Environment, 15(2), 206–221. Martinot, D., Bagès, C., & Désert, M. (2012). French children's awareness of gender stereotypes about mathematics and reading: When girls improve their reputation in math. Sex Roles, 66(3–4), 210–219. Parens, E., & Asch, A. (1999). The disability rights critique of prenatal genetic testing. Reflections and Recommendations. Hastings Center Report, 29(5), S1–S22. Roget's 21st Century Thesaurus. (2009). Abnormality. Retrived from http://www.thesaurus.com/browse/ abnormality. Accessed 15 May 2015. Trimper, J. B., Wolpe, P. R., & Rommelfanger, K. S. (2014). When "I" becomes "We": Ethical implications of emerging brain-to-brain interfacing technologies. Frontiers in Neuroengineering, 7(4). doi:10.3389/ fneng.2014.00004. United Nations. (2007). Convention on the rights of persons with disabilities. United Nations. Retrieved from http:// www.un.org/disabilities/. Accessed 15 May 2015. Wolbring, G. (2003). Disability Rights Approach Toward Bioethics? Journal of Disability Policy Studies, 14(3), 174–180. Wolbring, G. (2004). The animal farm philosophy of genetic discrimination. Law and the Human Genome Review, July-Dec; (21), 165–184. Wolbring, G. (2005). HTA Initiative #23 The triangle of enhancement medicine, disabled people, and the concept of health: A new challenge for HTA, health research, and health policy. Alberta Heritage A 8 Foundation for Medical Research (AHFMR) webpage: Alberta Heritage Foundation for Medical Research (AHFMR). Retrieved from http://www.ihe.ca/docu ments/HTA-FR23.pdf. Accessed 15 May 2015. Wolbring, G. (2010). Nanotechnology and the transhumanization of health, medicine, and rehabilitation. In D. Lee Kleinmann, J. Delborne, K. Cloud-Hansen & J. Handelsman (Eds.) Controversies in Science & Technology: Volume 3. From Evolution To Energy, (pp. 290–303). New Rochelle: Mary Ann Liebert. Wolbring, G. (2012). Ethical theories and discourses through an ability expectations and ableism lens: The case of enhancement and global regulation. Asian Bioethics Review, 4(4), 293–309. Further Readings Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Retrieved from http://www.dsm5.org/ Pages/Default.aspx. Accessed 15 May 2015. Eugenics Archives What Sorts of people should there be. Retrieved from http://Eugenicsarchive.ca. Accessed 15 May 2015. Abuse: Child Abuse Amy Mullin University of Toronto Mississauga, Mississauga, ON, Canada Abstract Following a brief account of the evolution of our current understanding and practices with respect to child maltreatment, child abuse and neglect are defined as actions and omissions that avoidably cause children significant suffering or impair their development of basic physical, intellectual, and emotional capacities. Since children's suffering and the basic capacities that are impaired may be physical or mental, abuse and neglect may be physical or emotional. Justifications for assignments of responsibility to care for children are discussed, along with a variety of proactive measures to prevent avoidable harms and reactive measures to respond to evidence of maltreatment. Attention is paid throughout to the impact of bias on child protection practices intended to prevent or respond to abuse and neglect. Abuse: Child Abuse Keywords Abuse; Neglect; Children; Children's rights; Care; Parents; Autonomy; Child protection Introduction It is now widely agreed that children, as inherently vulnerable and dependent people, deserve social protection when abused or neglected. This departs substantially from past practices and ideologies, in which children were the property of their fathers and could be beaten, killed, or sold (McGillivray 2011). It also departs from attitudes and practices that do not treat children as property but recognize parents as having final authority and sole responsibility to make decisions on their behalf. The United Nations Convention on the Rights of the Child (UNCRC) promises children the right to be free from abuse, both physical and mental, and stipulates that states should use a variety of means (legislative, educative, and social) to protect children from it. The large number of states who have signed and ratified this convention testifies to extensive cross-cultural commitment to protecting children's interests in avoiding significant harm. However, there is less agreement about which actions and omissions constitute abuse and neglect, what proactive measures states should take to protect children, and what should be done when abuse or neglect is detected. This entry offers a brief account of changing global attitudes toward behaviors that seriously and avoidably harm children. I define abuse and neglect, suggest a standard to use to assess whether or not harm suffered amounts to abuse or neglect, and discuss justifications for individual and state responsibilities to protect children and respond to serious harm. This is followed by analyses of some ethical issues connected with child maltreatment. The entry however leaves aside issues about harms that occur to fetuses before birth or which prevent birth. History and Development The belief that children are the property of their parents, or more narrowly their fathers (the Abuse: Child Abuse proprietarian view) has been traced to the Roman doctrine of patria potestas (McGillivray 2011). Fathers could treat their children as they wished, and children had no legal recourse. English common law introduced limits to the power of fathers, and John Locke argued that parental rights are grounded in parental responsibilities, the fiduciary view of parental rights (Archard 2004). Nonetheless for centuries rights were restricted to people thought to be autonomous, with the ability to self-govern in accordance with goals and commitments, and hence children had no legal rights (Brennan 2002). In the twentieth century, children's rights, based on their significant interests, became increasingly recognized, with rights protecting either interests or choices (Brennan 2002). The UNCRC (1989) is the latest in a succession of twentieth-century international declarations of children's rights. It has been ratified by 195 countries and signed by two others (Somalia and the United States). Ratifying states are subject to monitoring and required to make progress reports. The UNCRC recognizes children's rights, outlines parents' responsibilities to meet children's needs, and identifies a role for states to support parents (Article 27) and protect children from abuse and neglect (Article 19). Increasing recognition of children's rights and the role states should play in protecting children from rights violations has been accompanied by growing international attention to instances of child maltreatment. Ian Hacking (1991) traces the evolution of the concept of child abuse, from the nineteenth-century concept of cruelty to children, closely associated with physical abuse and neglect, to the mid-twentieth century concept of child abuse. While the latter emerged in response to medical review of paediatric x-rays, it became increasingly medicalized (with abusers diagnosed as mentally ill) and was extended in the latter half of the twentieth century to include a variety of significant harms to children, such as emotional and sexual abuse. Greater public attention to children's suffering was accompanied by a rise in laws that mandate reporting of suspected or witnessed abuse and global expansion in the size and role of child protection services. Heightened 9 global concern about child abuse and neglect has also identified practices that exploit children's labor (child slavery, dangerous work, work that prevents them from acquiring an education) as abusive. Conceptual Clarification There is broad consensus that children's interests deserve social protection and those who abuse or neglect children are to be condemned. However, it is less clear what actions should be identified as maltreating children, particularly when cultural differences in interactions with children are taken into account (see Bayliss and Downie 1997), and what standard should be used to determine whether children have been harmed to a degree that constitutes abuse or neglect. In this entry, I define abuse and neglect, discuss the standard that should be used to identify them, and conclude with remarks about assigning responsibility to provide care without which one cannot assign responsibility for neglect. Children may be harmed both physically and emotionally; either their current well-being or their future development may be negatively impacted; and they may be harmed by intentional activities, by incapable caregivers, and through ignorance of or inattention to their needs. When children are harmed intentionally, significantly, a