Cornyn, Grassley, Klobuchar roll out bill to protect data amid 23andMe bankruptcy
In a groundbreaking move, Republican senators John Cornyn and Chuck Grassley, along with Democratic Senator Amy Klobuchar, have come together to introduce a bipartisan measure aimed at protecting sensitive genetic data in response to the recent concerns raised by 23andMe’s bankruptcy. This new bill, known as the Don’t Sell My DNA Act, seeks to safeguard customers’ genetic information when a company that holds such data files for bankruptcy.
The proposed legislation would include genetic information in the definition of “personally identifiable information” in the bankruptcy code, providing much-needed protections for individuals in the event of a company’s bankruptcy proceedings. Currently, the bankruptcy code offers safeguards for personally identifiable information to prevent identity theft and other unlawful activities, but does not specifically address genetic information.
According to Senate aides, the existing definition of personally identifiable information does not encompass genetic data, leaving it vulnerable to misuse. By updating the definition to include genetic information, this bill aims to address this gap in protection and ensure that individuals’ genetic data is not weaponized against them or disclosed without their consent.
Furthermore, the Don’t Sell My DNA Act also addresses consumer privacy concerns by requiring companies to obtain affirmative consent from consumers before selling or leasing their genetic information during bankruptcy proceedings. Additionally, companies would be mandated to provide written notice to consumers regarding the use, sale, or lease of their genetic information.
The bill also stipulates that the trustee or debtor in possession must delete any genetic information that is not subject to a sale or lease, further safeguarding individuals’ privacy rights. Senator Cornyn emphasized the importance of protecting Americans’ genetic data, stating that while advancements in DNA testing have provided valuable insights, companies must have a plan in place to safeguard this data in the event of bankruptcy.
Similarly, Senator Klobuchar highlighted the need for greater consumer control over their sensitive health data, particularly in light of reports that 23andMe intended to sell customer genetic data assets to a pharmaceutical company. Senator Grassley echoed these sentiments, emphasizing the importance of ensuring that personal information shared with public companies remains secure in the event of bankruptcy.
The recent announcement that Regeneron Pharmaceuticals will acquire 23andMe through a bankruptcy auction has raised concerns about data privacy moving forward. While Regeneron has pledged to protect consumer information, the Don’t Sell My DNA Act aims to establish new protections to safeguard Americans’ privacy and prevent their genetic data from being treated as a financial asset.
In conclusion, the bipartisan effort to introduce the Don’t Sell My DNA Act marks a significant step towards enhancing data privacy protections for individuals in the wake of 23andMe’s bankruptcy. By updating the bankruptcy code to include genetic information and implementing measures to secure consumer consent and notification, this bill aims to ensure that Americans’ sensitive genetic data remains protected and under their control.
