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the Law of Genetic Privacy

dc.contributor.authorClayton, Ellen W.
dc.identifier.citationJournal of Law & Biosciences, 1-36, May 14, 2019en_US
dc.descriptionarticle published in a journal of law and the Biosciencesen_US
dc.description.abstractRecent 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.en_US
dc.format.extent1 PDF (36 pages)en_US
dc.publisherJournal of Law and the Biosciencesen_US
dc.subject.lcshRight of Privacyen_US
dc.titlethe Law of Genetic Privacyen_US
dc.title.alternativeApplications, Implications, and Limitationsen_US

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