If 23andMe goes bankrupt, what happens to their millions of customers’ personal and genetic data?
Sara Gerke, Melissa B. Jacoby, and I. Glenn Cohen explore this issue in a new article published on March 2 in the New England Journal of Medicine, titled “Bankruptcy, Genetic Information, and Privacy — Selling Personal Information.”
The data are not protected by HIPAA, the authors note. The U.S. has no comprehensive federal privacy laws (and handful of overlapping, conflicting state laws.) Sure, Congress could pass consumer protection laws, but “it has been difficult to get large-scale privacy reform through Congress.”
Indeed, as the authors note, 23andMe’s privacy statement “reserves the company’s right to transfer customers’ personal information in the event of a company sale or bankruptcy.”
Basically, Gerke, Jacoby, and Cohen argue, little is stopping this data (potentially 14 million consumers’ worth) from being sold to the highest bidder.
Conclusion: “We believe it’s time to reconsider how [genetic information] data are regulated.”
Sara Gerke is an associate professor at the University of Illinois Urbana-Champaign College of Law. Melissa B. Jacoby is a law professor at the University of North Carolina at Chapel Hill. I. Glenn Cohen is a Harvard Law professor and faculty director of the Petrie-Flom Center for health law policy, biotechnology, and bioethics at Harvard Law School.