“The company has already been in business selling consumer data to pharmaceutical and biotech industries for some time, and the data it holds would remain protected under relevant laws pertaining to sensitive health information.”
Why this is important: 23andMe, once a leader in consumer genomics and at-home DNA testing, has filed for Chapter 11 bankruptcy, sparking major privacy concerns for its 15 million customers. The company, which reached a peak valuation of $6 billion in 2021, saw its value plummet to just $12 million by 2024 following a series of financial challenges, including a massive data breach in 2023 that exposed the records of seven million users and a failed attempt to take the company private. As the company prepares to wind down operations, there is growing anxiety over what will happen to the vast amounts of sensitive genetic and health data it has collected over nearly two decades. Although the data is legally protected, potential buyers of the company’s assets may not be required to allow users to opt out or delete their data, raising serious concerns about consent, transparency, and long-term security.
Most customers were automatically opted in to data sharing with third parties, and 23andMe has had partnerships with at least 30 companies, including pharmaceutical giant GlaxoSmithKline, often under confidential agreements. While users have the ability to request deletion of their data and destruction of their DNA samples by closing their accounts, these options have become more urgent as the company edges closer to closure. Some U.S. states, such as California, offer limited legal protections under laws like the California Consumer Privacy Act (CCPA), which allows consumers to request full data deletion. However, federal laws provide little recourse, and protections vary widely by state.
Privacy experts warn that 23andMe's situation is a reminder of how vulnerable consumers are when companies built on personal data fail. Genetic data, unlike passwords or credit card numbers, cannot be changed, making its exposure particularly risky. Critics argue that companies dealing with such intimate information must embed privacy protections into their operations from the start, including clear plans for what happens to data in the event of a shutdown, acquisition, or restructuring. They call for a shift from reactive privacy measures to proactive data governance, including the implementation of robust security protocols, strict access controls, and adherence to internationally recognized standards such as SOC 2 and ISO certifications. Ultimately, the 23andMe case underscores the broader industry realization that if user data is the foundation of a business, then protecting it must remain a priority, even beyond the life of the company itself. --- Shane P. Riley
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