A Privacy Predicament: 23andMe's Genetic Data Sale Amid Bankruptcy
Legal action initiated by multiple states aimed at stopping 23andMe from selling genetic data obtained through at-home DNA tests.
In a concerning turn of events, the direct-to-consumer DNA testing service 23andMe, now under bankruptcy proceedings, could potentially expose the genetic information of millions of customers to potential buyers.
As Oregon Atty. Gen. Dan Rayfield aptly put it, "This isn't just data - it's your DNA."
With a bankruptcy valuation of over $6 billion, 23andMe has obtained DNA samples from more than 15 million customers. This sale has raised alarm bells concerning privacy standards, with genetic data being uniquely sensitive, immutable, and irreplaceable if stolen. In response, 27 states and the District of Columbia have filed a joint lawsuit against 23andMe, asserting that customers have an inherent right to their personal genetic information.
DNA Data Up for Grabs
In May, 23andMe announced plans to be sold to New York-based drug maker Regeneron Pharmaceuticals, who agreed to abide by the existing privacy policy. However, a competing offer from nonprofit TTAM Research Institute, led by 23andMe co-founder Anne Wojcicki, has revived the sale process.
Critics argue that selling genetic data without explicit consent violates privacy regulations. In a statement, a 23andMe spokesperson dismissed the claims, stating that the sale does not infringe upon privacy standards and customers would retain the same rights and protections under the winning bidder.
Congressional Concerns
Recently, three congressmen on the House Committee on Energy and Commerce sent a letter to 23andMe, expressing concerns over data privacy policies and the potential implications of the company's bankruptcy. During a recent testimony in Washington, 23andMe interim Chief Executive Joseph Selsavage revealed that 1.9 million customers have requested their genetic data be deleted since the company's bankruptcy filing in March.
Critics argue that 23andMe's privacy policy is insufficient in ensuring customer data protection, particularly considering the unique sensitivity of genetic data. Sara Geoghegan, senior counsel at the Electronic Privacy Information Center, expressed her concerns, stating, "I would be very concerned if I had given a swab to 23andMe. There is little we can do to control what happens to it."
The Future of Genetic Privacy
As of June 13, 2025, 23andMe is set to emerge from bankruptcy under the ownership of the TTAM Research Institute led by Wojcicki, possibly signaling a shift towards better privacy protection. However, ongoing privacy and legal concerns persist, with the states and consumer advocates maintaining a vigilant eye on the proceedings.
Sources
- States sue over 23andMe selling customers' genetic data without consent (CNBC)
- 23andMe files for bankruptcy, putting its hoard of personal health information at risk (Los Angeles Times)
- Congressmen sound the alarm over data privacy following 23andMe bankruptcy (Fox Business)
- States sue over Trump blocking billions of dollars for electric vehicle charging (Ars Technica)
- Hiltzik: 23andMe files for bankruptcy, putting its hoard of personal health information at risk (The Hill)
- 23andMe sells gene-testing business to DNA drug maker Regeneron (CNBC)
- Electronics Privacy Information Center (EPIC)
- The potential sale of 23andMe's genetic data, which contains the DNA samples of over 15 million customers, has sparked concerns about privacy standards in technology, science, and health-and-wellness sectors.
- Critics argue that selling genetic data without explicit consent violates privacy regulations, with many calling for stronger protections in the field of medical-conditions and science.
- In response to the privacy concerns, 27 states and the District of Columbia have filed a joint lawsuit against 23andMe, asserting that customers have an inherent right to their personal genetic information.
- Lawmakers in Los Angeles, California, along with members of the House Committee on Energy and Commerce, have expressed concerns over 23andMe's data privacy policies and the potential implications of the company's bankruptcy on customers' privacy.
- Businesses and consumers must remain vigilant about the handling of sensitive information, such as genetic data, as it could impact areas like health-and-wellness, finance, and business operations.
- As 23andMe emerges from bankruptcy under the ownership of the TTAM Research Institute in 2025, it is hoped that stricter privacy protections will be implemented to safeguard customers' genetic data.
