Last week, Representative Ben Cline (R-VA) and Zoe Lofgren (D-CA) introduced the bipartisan Don’t Sell My DNA Act, a bill aimed at strengthening consumer privacy by safeguarding genetic data obtained from individuals through relationships with biotech companies.
In recent years, more Americans have begun to utilize at-home DNA testing services for additional insight into their personal health and ancestry lineage, the need to safeguard this sensitive information has never been more vital. The Don’t Sell My DNA Act ensures that genetic data cannot be treated as just another corporate asset to be sold off when biotech or genetic testing companies undergo bankruptcy.
This bipartisan legislation serves as the House companion to S.1916, introduced in the Senate by Sens. John Cornyn (R-TX) and Amy Klobuchar (D-MN), along with Judiciary Committee Chairman Chuck Grassley (R-IA).
This legislation updates the current Bankruptcy Code to explicitly list genetic information in the definition of “personally identifiable information” and requires companies to provide written notice and obtain consumer consent before selling, leasing, or using their genetic data during bankruptcy proceedings. Additionally, it mandates that any genetic data not part of an approved transaction between entities is to be permanently deleted by the trustee or debtor in possession of this critical data.
“Bankruptcy should not lead to a fire sale of Americans’ most personal information,” Rep. Ben Cline said. “Your DNA is not just another line item that can just be sold without the knowledge of the consumer. It is private, sensitive data that belongs to you. This bill helps ensure that genetic information is not sold off to the highest bidder when a company files for bankruptcy.”
“People looking for long-lost relatives likely didn’t expect that their genetic data could be sold to the highest bidder. There is rightful outrage about the 23andMe plans, and Congress must step in to safeguard Americans’ privacy,” said Rep. Zoe Lofgren. “Our bipartisan Don’t Sell My DNA Act should race through both chambers and become law because it’s a straightforward way to protect our most sensitive data.”
The Don’t Sell My DNA Act is in response to the recent bankruptcy filing of 23andMe. Under current law, the Bankruptcy Code protects certain forms of personal information from being sold, such as one’s Social Security number, but fails to include personal genetic information. This bill closes this glaring loophole and brings the bankruptcy code to the 21st century to protect this personal and vital information.
-The Salem Times-Register
