HIPAA's Individual Right of Access to Genomic Data: Reconciling Safety and Civil Rights

American Journal of Human Genetics
Barbara J Evans

Abstract

In 2014, the United States granted individuals a right of access to their own laboratory test results, including genomic data. Many observers feel that this right is in tension with regulatory and bioethical standards designed to protect the safety of people who undergo genomic testing. This commentary attributes this tension to growing pains within an expanding federal regulatory program for genetic and genomic testing. The Genetic Information Nondiscrimination Act of 2008 expanded the regulatory agenda to encompass civil rights and consumer safety. The individual access right, as it applies to genomic data, is best understood as a civil-rights regulation. Competing regulatory objectives-safety and civil rights-were not successfully integrated during the initial rollout of genomic civil-rights regulations after 2008. Federal law clarifies how to prioritize safety and civil rights when the two come into conflict, although with careful policy design, the two need not collide. This commentary opens a dialog about possible solutions to advance safety and civil rights together.

Citations

Feb 20, 2018·Human Genomics·Adrian ThorogoodUNKNOWN Participant Values Task Team of the Global Alliance for Genomics and Health
Apr 29, 2020·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·Leslie E WolfLaura M Beskow
Apr 29, 2020·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·Susan M Wolf
Apr 29, 2020·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·Susan M WolfFrances Lawrenz
Apr 29, 2020·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·Susan M WolfUNKNOWN LawSeq Framework Task Force
Apr 29, 2020·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·Kevin B JohnsonJosh Peterson
May 6, 2020·American Journal of Physical Anthropology·Jennifer K Wagner
Jan 30, 2020·International Journal of Molecular Sciences·Kiara V WhitleyK Scott Weber
Aug 14, 2019·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Christi J GuerriniAmy L McGuire
Dec 24, 2018·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Karen L DavidUNKNOWN ACMG Social Ethical Legal Issues Committee
Jan 10, 2021·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Ellen Wright ClaytonBarbara J Evans
Mar 24, 2020·The American Journal of Pathology·Mark E SobelTimothy J O'Leary
Jul 7, 2018·American Journal of Human Genetics·Barbara J Evans

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