Congress Demands Answers on Data Privacy Ahead of 23andMe Sale | EUROtoday

US Representatives Alexandria Ocasio-Cortez and Jan Schakowsky on Thursday despatched letters to the 2 potential patrons of troubled genetic testing agency 23andMe demanding particulars about shopper information privateness ought to both of them purchase the corporate.

Signed by 20 different Democratic members of Congress, the letters—which will be learn right here and right here—have been despatched to Regeneron Pharmaceuticals and TTAM Research Institute, which have put forth separate bids to purchase 23andMe. In the letters, they ask Regeneron and TTAM if they are going to proceed to provide clients the choice to delete their information and withdraw consent for his or her information for use in medical analysis. They additionally need to know if 23andMe’s present coverage of not sharing genetic information with legislation enforcement with no warrant shall be upheld, and whether or not each entities intend to proactively notify 23andMe clients concerning the sale.

After struggling for years to show a revenue, 23andMe filed for chapter safety in March and put its property up on the market. Shortly after, its CEO, Anne Wojcicki, resigned. Wojcicki had tried unsuccessfully to take the corporate non-public, however her proposals have been rejected by a particular committee shaped by 23andMe’s board of administrators.

In May, biotech firm Regeneron introduced that it was named the profitable bidder in a chapter public sale, providing $256 million to accumulate 23andMe. “We believe we can help 23andMe deliver and build upon its mission to help those interested in learning about their own DNA and how to improve their personal health, while furthering Regeneron’s efforts to use large-scale genetics research to improve the way society treats and prevents illness overall,” mentioned George Yancopoulos, cofounder and chief scientific officer of Regeneron, in an organization assertion final month.

But after the public sale closed, Wojcicki put in a bid of her personal—providing $305 million via a newly shaped nonprofit, TTAM Research Institute. The supply prompted a federal decide to reopen the sale course of, and now each Regeneron and TTAM can have an opportunity to place in a closing bid.

Founded in 2006, 23andMe pioneered the sector of non-public genomics with its DNA check kits, which permit clients to study their ancestry, household connections, and sure medical dangers after submitting a spit pattern. Despite promoting greater than 12 million of its DNA testing kits, the corporate by no means achieved profitability and struggled to diversify its income streams after going public in 2021. In one other blow to the corporate, a serious information breach in 2023 uncovered the private information of thousands and thousands of consumers, together with a leak that focused customers with Chinese and Ashkenazi Jewish heritage.

The new proprietor of 23andMe would purchase its huge trove of genetic information, elevating questions on how that information can be used. Under 23andMe’s present coverage, clients can select to make their genetic information and different private info obtainable for medical analysis. They even have the choice of deleting all of their information and directing 23andMe to destroy their saliva pattern. The members of Congress who despatched the letters on Thursday are looking for readability from Regeneron and Wojcicki on whether or not they plan to proceed these practices.

The signees are additionally involved about genetic information being shared with legislation enforcement and immigration authorities and the potential of genetic and different private information getting used to coach AI fashions. They’re additionally asking Regeneron and TTAM to reveal a full checklist of all third events who at present have entry to 23andMe information and the steps each entities will take to make sure transparency of third-party entry sooner or later. 23andMe beforehand had a multi-year analysis collaboration with pharma big GlaxoSmithKline.

The representatives are asking Regeneron and TTAM to reply by June 26.

Wojcicki and 23andMe’s interim CEO, Joe Selsavage, testified throughout a House Oversight Committee listening to this week on the privateness and nationwide safety issues surrounding 23andMe’s sale. During that listening to, Selsavage instructed lawmakers that 1.9 million folks, or about 15 p.c of its buyer base, have requested for his or her genetic information to be faraway from the corporate’s servers because the firm filed for chapter safety in March.

This week, greater than two dozen states and the District of Columbia filed a lawsuit in opposition to 23andMe, arguing that the corporate can’t public sale 15 million clients’ extremely delicate private genetic info with out their consent or information.