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6 J.L. & Biosciences 1 (2019)

handle is hein.journals/jlbsc6 and id is 1 raw text is: Journal of Law and the Biosciences, 1-36 pge doi:10.1093/jlb/lsz007 Advance Access Publication 14 May 2019 Original Article The law of genetic privacy: applications, implications, and limitations Ellen Wright ClaytonI, Barbara J. Evans2, James W. Hazel3 and Mark A. Rothstein4,* 1. Craig-Weaver Professor of Pediatrics, Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, TN 37203, USA 2. Mary Ann and Lawrence E. Faust Professor of Law; Professor of Electrical and Computer Engineering; Director, Center for Biotechnology & Law, University of Houston, Houston, TX 77004, USA 3. Postdoctoral Fellow, Center for Genetic Privacy and Identity in Community Settings, Vanderbilt University Medical Center, Nashville, TN 37203, USA 4. Herbert F. Boehl Chair of Law and Medicine, Director, Institute for Bioethics, Health Policy & Law, University of Louisville School of Medicine, Louisville, KY 40202, USA *Corresponding author. E-mail: mark.rothstein@louisville.edu ABSTRACT Recent advances in technologyhave significantly improved the accuracy of genetic testing and analysis, and substantially reduced its cost, resulting in a dramatic increase in the amount ofgenetic information generated, analysed, shared, and stored by diverse individuals and entities. Given the diversity of actors and their interests, coupled with the wide variety of ways genetic data are held, it has been difficult to develop broadly applicable legal principles for genetic privacy. This article examines the current landscape of genetic privacy to identify the roles that the law does or should play, with a focus on federal statutes and regulations, including the Health Insurance Portabil- ity and Accountability Act (HIPAA) and the Genetic Information Nondis- crimination Act (GINA). After considering the many contexts in which is- sues of genetic privacy arise, the article concludes that few, if any, applicable legal doctrines or enactments provide adequate protection or meaningful control to individuals over disclosures that may affect them. The article de- scribes why it may be time to shift attention from attempting to control ac- cess to genetic information to considering the more challenging question of how these data can be used and under what conditions, explicitly addressing trade-offs between individual and social goods in numerous applications. KEYWORDS: DNA, genetics, genomics, GINA, HIPAA, privacy © TheAuthor(s) 2019. Published by Oxford University Press on behalf of Duke University School of Law, Harvard Law School, Oxford University Press, and Stanford Law School. This is an Open Access article distributed under the terms ofthe Creative Commons Attribution License (http://creativecomnons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited

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