Government Oversight of Genetic Ancestry Tests

Previous attempts to improve oversight of direct to consumer (DTC) genetic tests include efforts last year by New York and California health agencies to bring services such as 23andme under the regulatory auspices of other medical tests. (Click here for update). But in a recent Science Policy Forum, five leading scholars – Sandra Soo- Jin Lin (Stanford), Deborah Bolnick (Texas), Troy Duster (Berkeley/NYU), Pilar Ossorio (Wisconsin) and Kimberly TallBear (Berkeley) – make a reasoned argument for broader federal oversight of DTC genetic ancestry tests. Noting that these tests “fall into an unregulated no-man’s land, with little oversight and few industry guidelines to ensure quality, validity, and [solid] interpretation of information,” the authors expand upon the research-oriented recommendations made by the American Society of Human Genetics to offer public policy guidance.

After discussing the challenges created by ancestry tests and the need for greater accountability among researchers, the authors conclude

Federal agencies such as the Federal Trade Commission, the Food and Drug Administration, and the Centers for Disease Control and Prevention could play pivotal roles in setting industry standards for what constitutes responsible and accountable practices. These agencies can promote the dialogue and research necessary to discover common language and to identify best practices for presenting the limitations of current genomic technologies and the risks associated with over-extrapolating or misinterpreting genetic ancestry results. New regulations on such matters will help shape how practitioners are able to communicate genetic ancestry testing results to consumers.

I make a similar argument in Playing the Gene Card?, where I discuss the specific impact genetic ancestry tests can have on racial minorities and suggest that regulatory agencies develop race impact assessments to identify and mitigate such harms. While some may consider these tests to be largely recreational, they are having an increasing impact on society in terms of how we understand who we are, why some of us are sicker than others, and the meaning of human difference. To the extent that this information is being marketed to the public in a manner that is not always rigorous, it is past time for policy makers to get involved.