Congress Demands Answers on Data Privacy Ahead of 23andMe Sale

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US Representatives Alexandria Ocasio-Cortez and Jan Schakowsky connected Thursday sent letters to nan 2 imaginable buyers of troubled familial testing patient 23andMe demanding specifications astir user information privateness should either of them get nan company.

Signed by 20 different Democratic members of Congress, nan letters—which tin beryllium publication here and here—were sent to Regeneron Pharmaceuticals and TTAM Research Institute, which person put distant abstracted bids to bargain 23andMe. In nan letters, they inquire Regeneron and TTAM if they will proceed to springiness customers nan action to delete their information and retreat consent for their information to beryllium utilized successful aesculapian research. They besides want to cognize if 23andMe’s existent argumentation of not sharing familial information pinch rule enforcement without a warrant will beryllium upheld, and whether some entities intend to proactively notify 23andMe customers astir nan sale.

After struggling for years to move a profit, 23andMe revenge for bankruptcy protection successful March and put its assets up for sale. Shortly after, its CEO, Anne Wojcicki, resigned. Wojcicki had tried unsuccessfully to return nan institution private, but her proposals were rejected by a typical committee formed by 23andMe’s committee of directors.

In May, biotech institution Regeneron announced that it was named nan successful bidder successful a bankruptcy auction, offering $256 cardinal to get 23andMe. “We judge we tin thief 23andMe present and build upon its ngo to thief those willing successful learning astir their ain DNA and really to amended their individual health, while furthering Regeneron’s efforts to usage large-scale genetics investigation to amended nan measurement nine treats and prevents unwellness overall,” said George Yancopoulos, cofounder and main technological serviceman of Regeneron, successful a company statement past month.

But aft nan auction closed, Wojcicki put successful a bid of her own—offering $305 cardinal done a recently formed nonprofit, TTAM Research Institute. The connection prompted a national judge to reopen nan waste process, and now some Regeneron and TTAM will person a chance to put successful a last bid.

Founded successful 2006, 23andMe pioneered nan section of individual genomics pinch its DNA trial kits, which let customers to study astir their ancestry, family connections, and definite aesculapian risks aft submitting a spit sample. Despite trading much than 12 cardinal of its DNA testing kits, nan institution ne'er achieved profitability and struggled to diversify its gross streams aft going nationalist successful 2021. In different rustle to nan company, a awesome information breach successful 2023 exposed nan individual information of millions of customers, including a leak that targeted users pinch Chinese and Ashkenazi Jewish heritage.

The caller proprietor of 23andMe would get its immense trove of familial data, raising questions astir really that information would beryllium used. Under 23andMe’s existent policy, customers tin take to make their familial information and different individual accusation disposable for aesculapian research. They besides person nan option of deleting each of their data and directing 23andMe to destruct their saliva sample. The members of Congress who sent nan letters connected Thursday are seeking clarity from Regeneron and Wojcicki connected whether they scheme to proceed those practices.

The signees are besides concerned astir familial information being shared pinch rule enforcement and migration authorities and nan anticipation of familial and different individual information being utilized to train AI models. They’re besides asking Regeneron and TTAM to disclose a afloat database of each 3rd parties who presently person entree to 23andMe information and nan steps some entities will return to guarantee transparency of third-party entree successful nan future. 23andMe antecedently had a multi-year investigation collaboration pinch pharma elephantine GlaxoSmithKline.

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

Wojcicki and 23andMe's interim CEO, Joe Selsavage, testified during a House Oversight Committee proceeding this week connected nan privateness and nationalist information concerns surrounding 23andMe’s sale. During that hearing, Selsavage told lawmakers that 1.9 cardinal people, aliases astir 15 percent of its customer base, person asked for their familial information to beryllium removed from nan company’s servers since nan institution revenge for bankruptcy protection successful March.

This week, much than 2 twelve states and nan District of Columbia revenge a suit against 23andMe, arguing that nan institution cannot auction 15 cardinal customers’ highly delicate individual familial accusation without their consent aliases knowledge.