23andMe’s Uncertain Future: What It Means for Your Genetic Data Privacy
23andMe, a leading DNA and genetic testing company, is facing significant challenges following a major data breach and ongoing financial struggles. With bankruptcy looming, concerns are mounting about the future of the genetic data belonging to approximately 15 million customers who have entrusted their personal information to the firm. This article delves into the current state of 23andMe, the implications of the data breach, and what customers can do to protect their genetic information.
The Rise and Fall of 23andMe
Once valued at $6 billion after going public in early 2021, 23andMe has seen its worth drop by over 99%. The company’s troubles stem from:
- A decline in consumer interest in its one-time-use test kits.
- Underwhelming growth in subscription services.
- A significant data breach affecting nearly 7 million users.
In September 2023, 23andMe agreed to a $30 million settlement for a lawsuit related to this data breach, which compromised sensitive information, including users’ genetic predispositions and ancestry reports. Shortly thereafter, CEO Anne Wojcicki hinted at potential third-party takeover proposals but later retracted, announcing plans to take the company private. This led to the immediate resignation of all independent board members.
Bankruptcy and Its Consequences
In March 2024, 23andMe filed for bankruptcy protection, leading to the court-supervised sale of the company’s assets, which include large datasets of DNA information. The resignation of Wojcicki marked a significant turning point for the company.
What Happens to Genetic Data?
With the company’s uncertain future, many customers are asking: What will happen to my genetic data? 23andMe’s privacy policy allows for personal information to be accessed, sold, or transferred during bankruptcy proceedings. While the company claims that its data privacy policies will remain in effect, this offers little reassurance to concerned customers.
Importantly, 23andMe is not governed by the Health Insurance Portability and Accountability Act (HIPAA), which means it is primarily bound by its own privacy policies, which can be altered at any time. The lack of federal regulation, combined with a complex array of state privacy laws, leaves customers vulnerable.
Protecting Your Data
As 23andMe navigates its financial turmoil, experts urge customers to take proactive steps to safeguard their genetic information. California Attorney General Rob Bonta emphasized that state residents have the right to request the deletion of their genetic data.
Meredith Whittaker, president of the encrypted messaging app Signal, strongly advised users to close their accounts immediately, stating, “If anyone in your family gave their DNA to 23andMe, for all of your sakes, close your/their account now.”
Steps to Delete Your 23andMe Account
If you wish to delete your 23andMe account, follow these simple steps:
- Log in to your 23andMe account.
- Navigate to Settings > Account Information > Delete Your Account.
- Confirm your decision when prompted. Please note that this action is permanent and irreversible.
It’s important to note that even after account deletion, 23andMe may retain certain data for compliance purposes. For instance, the company may keep information such as genetic data, date of birth, and gender for unspecified periods. Furthermore, if you consented to share data for research, reversing that decision does not delete the information.
Final Thoughts
As 23andMe grapples with its future, the fate of millions of customers’ genetic data remains uncertain. Taking action now to delete accounts or request data removal may be prudent for those concerned about privacy. For ongoing updates, keep an eye on credible sources like TechCrunch and the Electronic Frontier Foundation.
For more insights into data privacy and protection, visit our Data Privacy Tips page.
