WASHINGTON – U.S. Senators John Cornyn (R-TX), Amy Klobuchar (D-MN), and Chuck Grassley (R-IA) today introduced the Don’t Sell My DNA Act, which would safeguard customers’ sensitive genetic information when an entity that maintains their data files for bankruptcy:

“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,” said Sen. Cornyn. “By updating the bankruptcy code, this legislation would safeguard Americans’ sensitive genetic information to ensure it cannot be weaponized against them or made public without their knowledge and consent.”

“For too long companies have profited off of Americans’ data while consumers have been left in the dark, which is especially concerning in light of reports that 23andMe plans to sell customer genetic data assets to a large pharmaceutical company,” said Sen. Klobuchar. “This bill will put new protections in place to safeguard Americans’ privacy while giving consumers greater control over how their sensitive health data is shared.”

“Consumers should feel confident that any personal information shared with a public company isn’t up for grabs when that company files for bankruptcy,” said Sen. Grassley. “This bill would fill gaps in current law to help safeguard consumers’ genetic information and ensure Americans’ DNA isn’t treated like any other financial asset.”

Background:

Recently, data privacy concerns have been raised when companies who maintain data on users’ DNA and genetic profiling file for bankruptcy. Under current law, the Bankruptcy Code provides protections for personally identifiable information in bankruptcy court proceedings to prevent the possibility of identity theft, harm, or other unlawful injury from occurring. The current definition of personally identifiable information includes an individual’s name, address, email, phone number, social security number, credit card number, and other information that could be used for identification purposes. However, the definition is outdated and does not include reference to genetic information, meaning this information is vulnerable. This legislation would solve this problem by updating the definition of “personally identifiable information” in the bankruptcy code to include genetic information.

The Don’t Sell My DNA Act strengthens consumer privacy protections by:

• Modernizing the definition of “personally identifiable information” in the Bankruptcy Code to include genetic information;
• Having consumers affirmatively consent to the use, sale, or lease of their genetic information after the bankruptcy case commences;
• Requiring companies to provide prior written notice of the use, sale or lease of their genetic information during bankruptcy;

And requiring the trustee or debtor in possession to delete any genetic information not subject to a sale or lease.