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Privacy Concerns regarding Open Medical Data (Preprint)


 UNSTRUCTURED
 With next-generation sequencing (NGS), it is now feasible to sequence large amounts of DNA and publish comprehensive individual genome-phenome data sets for genome-wide association studies. The Personal Genome Project (PGP) is a collaborative research initiative that aims to sequence and publicize the complete genomes and medical records of 100,000 volunteers, in order to enable NGS into personal genomics and personalized medicine. The PGP puts genome data in an open medical database on the Internet to promote studies by many researchers and citizen scientists. However, open medical data pose significant privacy and ethical issues because it can convey identifiable and predictive information concerning particular individuals and their family members and relatives. The purpose of this paper is to identify the most important privacy and security risks of open medical data and explain how to use data protection and privacy policies to handle the risks. This paper begins by detailing the growth of genetic testing and the characteristics of genomic data. We then present the case study of the PGP’s open medical data and open consent model and highlight how open medical data could raise important questions regarding privacy and confidentiality of genomic and personal data. We further propose privacy policy considerations to resolve these challenging privacy concerns. We conclude with a discussion of the implications of the study and directions of future research.
