23andMe Sale Greenlit: Nonprofit Founded by Creator to Safeguard Your DNA Data

A bankruptcy judge has approved the sale of 23andMe to a nonprofit called the TTAM Research Institute, led by co-founder Anne Wojcicki. This decision averts a controversial outcome where the company’s valuable DNA data could have been sold to the highest bidder, like Regeneron Pharmaceuticals, which had initially won it with a bid of $256 million.

23andMe allows customers to explore their ancestry and health-related genetic risks through saliva tests. About 80% of its over 15 million users have agreed to share their data for research, making it a valuable asset.

The sale process became contentious. States raised concerns that genetic information is distinct and should not be handled like traditional assets during bankruptcy. They argued that people deserve control over their unique genetic data.

After negotiations, the TTAM Research Institute emerged victorious with a $305 million bid. The organization has committed to maintaining privacy policies and enabling customers to remove their data upon request. Judge Brian Walsh noted that the sale structure "involves a sale of customer data only in a technical sense."

Legal experts are also weighing in. Laura Coordes, a bankruptcy expert from Arizona State University, highlights the ongoing absence of regulations for genetic data. This case emphasizes the urgent need for laws to protect such sensitive information and address its status as legal property.

Consumer reactions to the potential sale were mixed, especially following a major data breach in 2023, which exposed millions of customers’ genetic data. This incident heightened concerns about privacy and the safety of personal information. Many customers, including individuals with sensitive backgrounds, were left feeling vulnerable and unsure about the future of their data.

Kyle, a concerned customer, decided to delete his family’s data amid fears of misuse. He expressed that historically, communities like his have struggled to protect their genealogical information due to the risks associated with public knowledge of their identities.

The case may prompt discussions on broader data privacy protections. As Coordes points out, it’s crucial for legislators to prioritize these protections to minimize public concern and ensure the secure handling of sensitive information.

The outcome of this case could significantly influence practices surrounding genetic data management, especially in the context of corporate restructuring and bankruptcy. It highlights a need for clearer regulations in an evolving landscape of data privacy.

For more insights on this topic, you can refer to NPR and explore their coverage on data privacy and genetics.

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