Personal Genomics and Genetic Discrimination: Is Increased Access a Good Thing?
Western State Law Review, Vol. 45, No. 2, 2018
25 Pages Posted: 22 Oct 2018
Date Written: October 14, 2018
The last decade has seen substantial growth in the personal genomics industry. By 2017, databases from Ancestry, 23andMe, and FamilyTreeDNA alone contained sequencing data from roughly 7.5 million customers. While personal genomics services offer many potential health and social benefits, the increased availability of one’s genetic information also heightens the risk of genetic discrimination. The 2008 Genetic Information Nondiscrimination Act (GINA) protects against genetic discrimination in employment and health insurance contexts, but GINA does not go far enough to prevent the misuse of genetic information. Expansions to GINA are needed to prevent the improper use of genetic information in life, disability, and long-term care insurance; public school placement decisions; and gender-identity issues. Genetic information is an immutable characteristic, much like race or gender, but it also has the unique potential to foretell the development of traits, conditions, or diseases. Expanding GINA’s protections would protect all individuals, including customers of personal genomics services, from the misuse of such information. Genetic discrimination has a long history in this country, thus the ever-increasing access to genetic information should be accompanied with ever-expanding protections.
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