U.S. Senators John Cornyn, Amy Klobuchar, and Chuck Grassley have introduced the Don’t Sell My DNA Act in an effort to safeguard customers’ genetic data during bankruptcy proceedings. This legislative move comes amid privacy concerns following reports that 23andMe plans to sell customer genetic data assets to a large pharmaceutical company.
Senator Cornyn highlighted the need for updated legal frameworks, stating, “Advances in DNA testing have allowed Americans to have unprecedented access to important insights about their genetics, but these companies must have a plan to protect this data in the event of bankruptcy.” He emphasized that the legislation aims to ensure sensitive genetic information is not weaponized or made public without consent.
Senator Klobuchar expressed concerns over companies profiting from consumer data without adequate transparency. She stated, “For too long companies have profited off of Americans’ data while consumers have been left in the dark.” The bill seeks to enhance privacy protections and provide consumers with more control over their health data.
Senator Grassley addressed gaps in current law regarding personal information security during bankruptcies. He said, “Consumers should feel confident that any personal information shared with a public company isn’t up for grabs when that company files for bankruptcy.”
The proposed legislation updates the definition of “personally identifiable information” within the Bankruptcy Code to include genetic information. It mandates consumer consent for using or selling genetic data post-bankruptcy filing and requires prior notice before such transactions occur. Additionally, it calls for deleting any unsold or unleased genetic information.
This initiative responds to growing concerns about how sensitive genetic data is handled when companies managing such information face financial difficulties.
