Grassley, Cornyn Introduce Bipartisan Bill to Safeguard Consumers’ Genetic Data After 23andMe Bankruptcy Sparks Privacy Concerns

WASHINGTON – Senate Judiciary Committee Chairman Chuck Grassley (R-Iowa) joined Sens. John Cornyn (R-Texas) and Amy Klobuchar (D-Minn.) to introduce the Don’t Sell My DNA Act to safeguard consumers’ sensitive genetic data during corporate bankruptcy proceedings.

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

• Modernizing the Bankruptcy Code to include genetic information in the definition of “personally identifiable information”;
• Requiring written notice and affirmative consumer consent prior to the use, sale or lease of genetic information during bankruptcy proceedings; and
• Requiring the trustee or debtor in possession of genetic information to permanently delete any data not subject to a sale or lease.

“Consumers should feel confident that any personal information shared with a public company isn't up for grabs when that company files for bankruptcy,” Grassley said. “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.”

“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,” Cornyn said. “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,” Klobuchar said. “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.”

Audio of Grassley discussing the bill is available  HERE.

Read the full bill text HERE.

Background:

Recent bankruptcies of genetic testing and biotech companies – such as 23andMe – have raised concerns about the protection of consumers’ sensitive genetic data.

Under current law, the Bankruptcy Code prohibits entities from selling off “personally identifiable information,” which prevents identity theft, financial fraud and the unauthorized use of personal information. While the current definition of “personally identifiable information” includes an individual's name, address, email, phone number, social security number and credit card number, it does not include protections for genetic information. This legislation closes that gap.

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