Congress Calls for Solutions on Knowledge Privateness Forward of 23andMe Sale

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

Signed by 20 different Democratic members of Congress, the letters had been despatched to Regeneron Prescribed drugs and TTAM Analysis Institute, which have put forth separate bids to purchase 23andMe. Within the letters, they ask Regeneron and TTAM if they’ll proceed to provide clients the choice to delete their knowledge and withdraw consent for his or her knowledge for use in medical analysis. Additionally they wish to know if 23andMe’s present coverage of not sharing genetic knowledge with regulation enforcement with no warrant can be upheld, and whether or not each entities intend to proactively notify 23andMe clients in regards to 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 had been rejected by a particular committee shaped by 23andMe’s board of administrators.

In Might, biotech firm Regeneron introduced that it was named the profitable bidder in a chapter public sale, providing $256 million to amass 23andMe. “We consider we may help 23andMe ship and construct upon its mission to assist these concerned with studying about their very own DNA and the way to enhance their private well being, whereas furthering Regeneron’s efforts to make use of large-scale genetics analysis to enhance the way in which society treats and prevents sickness total,” mentioned George Yancopoulos, cofounder and chief scientific officer of Regeneron, in a firm assertion final month.

However after the public sale closed, Wojcicki put in a bid of her personal—providing $305 million by a newly shaped nonprofit, TTAM Analysis Institute. The provide prompted a federal choose to reopen the sale course of, and now each Regeneron and TTAM could have an opportunity to place in a closing bid.

Based in 2006, 23andMe pioneered the sphere of private genomics with its DNA take a look at kits, which permit clients to study their ancestry, household connections, and sure medical dangers after submitting a spit pattern. Regardless of 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 knowledge breach in 2023 uncovered the non-public knowledge of thousands and thousands of shoppers, together with a leak that focused customers with Chinese language and Ashkenazi Jewish heritage.

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

The signees are additionally involved about genetic knowledge being shared with regulation enforcement and immigration authorities and the potential of genetic and different private knowledge getting used to coach AI fashions. They’re additionally asking Regeneron and TTAM to reveal a full checklist of all third events who at the moment have entry to 23andMe knowledge 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 large GlaxoSmithKline.

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

Wojcicki and 23andMe’s interim CEO Joe Selsavage testified throughout a Home Oversight Committee listening to this week on the privateness and nationwide safety considerations surrounding 23andMe’s sale. Throughout that listening to, Selsavage instructed lawmakers that 1.9 million individuals, or about 15 p.c of its buyer base, have requested for his or her genetic knowledge to be faraway from the corporate’s servers for the reason that 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 not public sale 15 million clients’ extremely delicate private genetic data with out their consent or data.

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