23andMe Files for Bankruptcy: Implications for Genetic Data Privacy

Genetic testing company 23andMe has recently filed for Chapter 11 bankruptcy protection, initiating a strategic plan for selling the business. This decision comes as a significant shift for the firm, once valued at $6 billion and co-founded by CEO Anne Wojcicki in 2006, who has now stepped down following unsuccessful attempts to transition the company to private ownership.

The Value of Genetic Data and Privacy Concerns

With the company’s future uncertain, attention turns to the vast collection of genetic data it possesses. Privacy advocates have long highlighted the risks associated with entrusting personal genetic information to any organization. As concerns mount, customers face potential challenges concerning both the protection of their data and issues relating to its transfer to a new owner, which could affect their trust.

Legal Rights and Consumer Protections

California Attorney General Rob Bonta issued a consumer alert, reminding residents of California of their legal right to request the deletion of their data from such organizations. However, customers outside California may lack similar protections. That said, states like Washington provide some rights under the My Health My Data Act, and protections exist within the European Union’s General Data Protection Regulation.

“This situation clearly underscores the absence of a national health privacy law in the United States,” remarked Andrea Downing, a cofounder of the nonprofit The Light Collective. She noted that while awareness of the value and vulnerabilities surrounding genetic data evolves, consumers remain largely unprotected without specific state laws.

Data Ownership and Privacy Policies

According to John Verdi, senior vice president of policy at the Future of Privacy Forum, the forthcoming owner of 23andMe may have the capacity to revise privacy policies for new clients; however, the data collected under existing policies must be managed according to prior agreements. “The company has legal obligations regarding information collected under the current policies,” said Verdi.

Recommended Actions for Consumers

Experts argue that the transition to new ownership poses tangible data risks that customers cannot control. Kenn White, a respected data privacy advocate, expressed skepticism about the effectiveness of privacy policies during ownership changes, urging users to act swiftly to secure their information. “For regular individuals who use these services, you’re essentially on your own. My advice is to request your data to be deleted as soon as possible,” he noted.

Steps to Delete Data from 23andMe

If you wish to delete your genetic information stored with 23andMe, follow these steps:

1. Log in to your 23andMe account.
2. Navigate to Settings in your profile.
3. Scroll to 23andMe Data and select View.
4. Download a copy of your genetic information if desired.
5. Scroll down to Delete Data and click on Permanently Delete Data.
6. Confirm the deletion process through the email link sent by 23andMe.
7. If applicable, indicate that you want to destroy your biological sample by visiting Settings and then Preferences.

Conclusion

The bankruptcy and potential sale of 23andMe present significant implications for consumers concerned about the future of their genetic data. As the landscape of privacy continues to evolve, users are encouraged to take proactive measures regarding their information to ensure its safety and privacy.