The Implications of 23andMe’s Bankruptcy on Genetic Data Privacy
The landscape of consumer genetic testing has dramatically changed with the recent bankruptcy filing of 23andMe, a prominent player in this industry. This development has raised significant concerns regarding the privacy and security of customer genetic information.
The Unfolding of Christina Snyder Monahan’s Journey
Three years ago, Christina Snyder Monahan from Irvine received unexpected genetic test results from 23andMe, indicating she had nearly 50% Persian ancestry. Surprised by this revelation—which suggested connections to a heritage she believed was absent in her family history—she discovered more after her mother later revealed that her biological father was not the man who raised her. This shocking revelation led her to a journey of rediscovery, where she connected with a first cousin and four half-siblings through the platform, albeit with the emotional weight of knowing her biological father had passed away.
Now, confronted with 23andMe’s financial troubles and its potential sale of sensitive genetic data, Monahan, though appreciative of the connections made through the service, is apprehensive about the future of her information.
Understanding the Risks: What Happens to Your DNA?
In the wake of 23andMe’s bankruptcy filing, customers are left questioning the future of their genetic data. California Attorney General Rob Bonta has advised residents to consider deleting their accounts due to potential risks associated with data handling by a new owner. The 23andMe platform is now facing scrutiny regarding how its extensive database of genetic information will be transferred to potential buyers.
Genetic data carries unique sensitivity, as highlighted by Sara Geoghegan of the Electronic Privacy Information Center. She emphasizes that while customers are protected by the company’s terms of service, these could easily change under new ownership, raising alarm about who might gain access to this inherently private information.
Bankruptcy and Data Sales: The Legal Landscape
Recent judicial approval allows 23andMe to proceed with the sale of its assets, which includes the user data it has collected over the years. Despite assurances that any future buyer must adhere to 23andMe’s privacy policy, the loose, often ambiguous nature of such policies raises red flags for privacy advocates. Customers are encouraged to exercise their rights under privacy laws to request the deletion of their genetic information and samples.
History of 23andMe: From Prominence to Precipice
Founded in 2006 by Anne Wojcicki and Linda Avey, 23andMe gained recognition for pioneering accessible genetic testing. Initially priced at $399, the expensive kits became more affordable, attracting a wide customer base, including celebrities who participated in “spit parties” to share their genetic heritage.
The company, however, encountered significant operational hurdles, including regulatory setbacks that halted sales and a lack of a sustainable business model, which dependent on one-time purchases. As customer interest waned, stock prices plummeted following layoffs and a retraction of its biomedical division.
Future Concerns: Who Will Control Your Data?
The question remains: what will become of the wealth of genetic information now housed under 23andMe? Experts warn that potential buyers—ranging from pharmaceutical companies to insurance firms—could utilize this data in ways consumers may not have originally consented to. Concerns center around how genetic data might factor into insurance underwriting and personal medical assessments.
Moving Forward: Strategies for Consumers
For affected users, taking proactive steps is advisable. Customers of 23andMe should consider the following actions:
- Log into their account and navigate to the settings page to delete accounts and request the destruction of genetic samples.
- Withdraw consent for any third-party research involving their data.
- Stay informed about California’s Genetic Information Privacy Act and California Consumer Privacy Act, which afford customers rights regarding their genetic data.
The recent bankruptcy of 23andMe serves as a catalyst for discussions surrounding genetic data rights and privacy. As this situation unfolds, the way consumer data is handled in the context of genetic testing may undergo significant changes, prompting a broader conversation on data security and personal privacy.