At-home DNA testing kits have skyrocketed in popularity over the last several years, but little is known about exactly what the companies who analyze the samples actually do with the genetic and medical data they collect. Now, a coalition of the biggest companies in the at-home DNA testing business are forming a coalition to lobby Washington to codify rules for genetic data privacy.
The Hill first reported last week on the existence of the Coalition for Genetic Data Protection, which is comprised of at-home DNA testing companies 23&Me, Ancestry.com and Helix. It’s run by the Washington D.C. lobbying firm Mehlman Castagnetti Rosen & Thomas, and on the coalition’s website it says it is“...committed to the strict adherence of critical standards and principles, as well as working with the lawmakers to see these standards codified into any future data privacy law.” But privacy and biomedical ethics experts warn that a one-size-fits-all approach won’t work in the complex world of genetic data, which they say tells people not only things about you, but also about your relatives. They point to the case of the Golden State Killer, who was identified and charged with 26 counts of murder last year after investigators indentified him through a DNA match to a relative. And while the DNA testing companies say they wouldn’t allow police to access their databases without a warrant, privacy experts
How should companies like Ancestry.com and 23&Me be required to handle private data? Would similar protections for those that already apply to other medical data work for genetic data? What protections should be built into a genetic data privacy law to ensure that customers’ personal data isn’t shared or distributed?
We reached out to the Coalition for Genetic Data Protection, which includes Ancestry.com, 23&Me and Helix, and sent individual requests to those three companies as well to invite them to participate in our discussion. The Coalition was unable to make someone available at the time we requested. Ancestry.com and 23&Me were not able to provide us someone for comment, and as of the airing of this segment we have not received a response to our inquiry with Helix. We will update this if we receive a response from them.
David Agus, M.D., professor of medicine and biomedical engineering at the University of Southern California and author of several books, most recently “The Lucky Years: How to Thrive in the Brave New World of Health” (Simon & Schuster, 2016); in 2006 he co-founded Navigenics, a DNA testing company that used genetic data to help people determine their individual risk for certain health conditions, which was bought in 2012; he tweets @DavidAgus
Judith Daar, dean of the Chase College of Law at Northern Kentucky University in Highland Heights, KY, and the chair for the ethics committee at the American Society for Reproductive Medicine; her research interests include the intersection of law, medicine and ethics and reproductive technologies