The Law of Genetic Privacy: Applications, Implications, and Limitations

Journal of Law and the Biosciences, 1–36, 2019

36 Pages Posted: 30 May 2019

See all articles by Ellen Wright Clayton

Ellen Wright Clayton

Vanderbilt University - Law School

Barbara J. Evans

University of Houston Law Center

James Hazel

Center for Genetic Privacy & Identity in Community Settings, Vanderbilt University Medical Center

Mark A. Rothstein

University of Louisville - Institute for Bioethics, Health Policy, and Law; University of Louisville - Louis D. Brandeis School of Law

Date Written: May 7, 2019

Abstract

Recent advances in technology have significantly improved the accuracy of genetic testing and analysis, and substantially reduced its cost, resulting in a dramatic increase in the amount of genetic 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 Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA). After considering the many contexts in which issues 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 describes why it may be time to shift attention from attempting to control access 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

JEL Classification: K31, K32

Suggested Citation

Wright Clayton, Ellen and Evans, Barbara J. and Hazel, James and Rothstein, Mark A., The Law of Genetic Privacy: Applications, Implications, and Limitations (May 7, 2019). Journal of Law and the Biosciences, 1–36, 2019. Available at SSRN: https://ssrn.com/abstract=3384321 or http://dx.doi.org/10.2139/ssrn.3384321

Ellen Wright Clayton

Vanderbilt University - Law School ( email )

131 21st Avenue South
Nashville, TN 37203-1181
United States
615-322-1186 (Phone)
615-322-4548 (Fax)

Barbara J. Evans

University of Houston Law Center ( email )

4604 Calhoun Road
Houston, TX 77204-6060
United States
713-743-2993 (Phone)

James Hazel

Center for Genetic Privacy & Identity in Community Settings, Vanderbilt University Medical Center ( email )

2301 Vanderbilt Place
Nashville, TN 37240
United States

HOME PAGE: http://https://www.vumc.org/getprecise/people/team

Mark A. Rothstein (Contact Author)

University of Louisville - Institute for Bioethics, Health Policy, and Law ( email )

Louisville, KY 40202
United States

HOME PAGE: http://www.louisville.edu/bioethics

University of Louisville - Louis D. Brandeis School of Law ( email )

Wilson W. Wyatt Hall
Louisville, KY 40292
United States

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