: Republican senators John Cornyn and Chuck Grassley and Democratic Sen. Amy Klobuchar are rolling out a bipartisan measure to protect sensitive genetic data in response to privacy concerns sparked by 23andMe’s bankruptcy, Fox News Digital has learned.
Cornyn, R-Texas; Grassley, R-Iowa; and Klobuchar, D-Minn., are introducing the Don’t Sell My DNA Act, which would safeguard customers’ sensitive genetic information when an entity that maintains data files for bankruptcy. The bill would add genetic information to the definition of ‘personally identifiable information’ in the bankruptcy code.
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.
Senate aides told Fox News Digital the current definition of personally identifiable information includes an individual’s name, address, email, phone number, Social Security number, credit card numbers and other information that could be used for identification purposes.
Those aides said the definition is ‘outdated’ and does not include a reference to genetic information, leaving the information vulnerable.
‘This legislation would solve this problem by updating the definition of ‘personally identifiable information’ in the bankruptcy code to include genetic information,’ a Senate aide said.
The bill also addresses consumer privacy concerns by having consumers affirmatively consent to the sale or lease of their genetic information after a bankruptcy case commences and requiring companies to provide prior written notice of the use, sale or lease of their genetic information during bankruptcy.
The bill also requires the trustee or debtor in possession to delete any genetic information not subject to a sale or lease.
‘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 told Fox News Digital.
‘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.’
And Klobuchar said 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.’
‘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,’ Klobuchar said.
Grassley told Fox News Digital consumers should ‘feel confident that any personal nformation shared with a public company isn’t up for grabs when that company files for bankruptcy.’
Grassley told Fox News Digital the 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.’
On Monday, 23andMe announced Regeneron Pharmaceuticals would purchase 23andMe through a bankruptcy auction.
Senate aides said Regeneron promises to ‘protect consumer information, but the data privacy concerns for future bankruptcies remain.’
The genetic testing company 23andMe, once a pioneer in consumer DNA testing, filed for Chapter 11 bankruptcy in March amid financial struggles, a leadership shakeup and growing concerns about the security of its customers’ genetic data.
Regeneron Pharmaceuticals announced it will acquire ‘substantially all’ of genetic testing company 23andMe’s assets.
The pharmaceutical company said it won the court-supervised auction of the genetic testing company, with Regeneron agreeing to pay $256 million for the assets. The auction for 23andMe was part of the Chapter 11 bankruptcy protection it filed in March to arrange a sale of its business.
In its bankruptcy petition, the company estimated a range of $100 million to $500 million for its assets. Estimated liabilities were the same.
The pharmaceutical company is buying 23andMe’s personal genome service and its health and research services segments, according to 23andMe.