Direct-to-consumer DNA test kits, such as those sold by Ancestry and 23andMe, are now more popular than ever. These test kits require a consumer to submit a personal DNA sample in exchange for detailed results about the consumer’s ancestry. Although about half of the United States has a genetic privacy law, they vary in strictness and applicability to direct-to-consumer DNA test kits. There is currently no federal law regulating the test kit companies’ control over the DNA samples they collect, leaving the direct-to-consumer DNA test kit industry largely self-regulated. The company policies which regulate their own control over consumer DNA can leave room for interpretation about the limits of such control. This lack of clear government oversight, in addition to the inherent value of consumer DNA, creates a strong demand for an all-encompassing federal law that creates uniform collection, storage, and use of genetic information. Analysis of state genetic privacy laws provides a building block upon which an effective federal genetic privacy law can be constructed.
Alexander (Zan) E. Newkirk,
Someone Else May Own a Piece of You: Lack of Federal Regulation over Direct-to-Consumer DNA Test Kits,
N.C. J.L. & Tech.
Available at: https://scholarship.law.unc.edu/ncjolt/vol20/iss5/8