Skip to main content
Article
The Law of Genetic Privacy: Applications, Implications, and Limitations
Journal of Law and the Biosciences
  • Ellen Wright Clayton
  • Barbara J. Evans, Univ. of Houston
  • James W. Hazel, Vanderbilt University Medical Center
  • Mark A. Rothstein, Univ. of Louisville, School of Medicine
Document Type
Article
Publication Date
5-14-2019
Keywords
  • DNA,
  • genetic privacy,
  • genetic testing and analysis,
  • Genetic Information Nondisclosure Act
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.

Citation Information
Ellen Wright Clayton, Barbara J. Evans, James W. Hazel and Mark A. Rothstein. "The Law of Genetic Privacy: Applications, Implications, and Limitations" Journal of Law and the Biosciences Iss. doi:10.1093/jlb/lsz007 (2019) p. 1-36 ISSN: 2053-9711
Available at: http://works.bepress.com/ellen-clayton/21/