Wisconsin sues to stop 23andMe data sale

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Wisconsin joined a coalition of 27states, including neighboring Illinois, Michigan and Minnesota, seeking to block 23andMe from selling consumer data to third-party buyers. The lawsuit, which was filed Monday in Missouri, as part of the biotech company’s bankruptcy proceedings.

23andMe filed for bankruptcy in March and is attempting to sell personal and biological data collected from approximately 15 million consumers who purchased direct-to-consumer genetic testing services for ancestry or health condition analysis.

The data in question includes customer profiles, health information collected from surveys or uploaded from medical records, family tree data on relatives regardless of whether they are users, but most critically, the genotype data — the raw genetic code sequenced from biological samples provided by users.

“The magnitude of the data in this proposed sale stretches far beyond 23andMe consumers, impacting those who have no awareness of the sale as well as humans who do not even exist yet,” according to the complaint.

The states argue that 23andMe’s own privacy policy and state consumer protection and genetic privacy laws require explicit consent before customer data can be sold; however, 23andMe contends the proposed sale is within its privacy policy, including amendments it made in 2022 to address potential bankruptcy asset transfers.

The bankruptcy and proposed sale come after a decline in business and a 2023 data breach that exposed millions of customer records — the exact data it seeks to sell.

The multistate effort is yet another example of growing concerns over data privacy, ownership and consumer protection in the genetic testing industry.

The proposed third-party buyers include TTAM Research Institute, a non-profit medical research organization founded by 23andMe’s co-founder, Anne Wojcicki. TTAM and Wojcicki’s offer of $305 million came after Regeneron Pharmaceuticals proposed $256 million.

A hearing is scheduled for June 17 in St. Louis.