23andMe faces an uncertain future so does your genetic data
DNA and genetic testing pioneer 23andMe is in a state of upheaval. Following a major data breach in 2023 and years of financial struggles, the company now confronts a looming bankruptcy and growing uncertainty about the future of its customers’ genetic information.
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23andMe faces an uncertain future so does your genetic data
Best known for its accessible saliva-based test kits that reveal ethnic origins and health markers, 23andMe has seen its market value collapse by more than 99% from its $6 billion peak after going public in early 2021. The initial promise of the service has been overshadowed by challenges such as decreasing consumer interest and limited expansion of its subscription services.
The company faced a severe setback when hackers stole ancestry data from nearly 7 million users during a months-long breach in 2023. In response to a subsequent lawsuit, 23andMe reached a $30 million settlement with authorities, as reported by Reuters.
Shortly after these events, company founder and former CEO Anne Wojcicki hinted at potential strategic changes, including third-party takeovers, before retracting her comments and announcing plans to take the company private. Despite her reversal, the independent board members resigned en masse, deepening concerns about the company’s governance.
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Privacy Concerns and Legal Implications
With bankruptcy protection now in place and a court-supervised sale on the horizon, 23andMe’s extensive banks of genetic data are part of the assets being considered for transfer. Unlike traditional healthcare providers regulated under HIPAA, 23andMe operates under its own privacy policies. This means that, in the event of a sale or merger, customer information “may be accessed, sold or transferred” as stated in the company’s terms.
A spokesperson for 23andMe explained that their model is designed for transparency and is better suited for the kind of data they handle, rather than conforming to the HIPAA framework. However, the lack of comprehensive federal regulations combined with diverse state privacy laws means that millions of Americans’ genetic information might end up in new hands.
This scenario becomes even more concerning given that 23andMe has shifted its focus away from expensive drug development towards monetizing its customer database—a move highlighted by former statements reported in the Financial Times.
Taking Control of Your Genetic Data
As uncertainty looms over the fate of 23andMe, experts urge users to consider proactive measures to safeguard their genetic information. In California, Attorney General Rob Bonta has reminded residents that state law allows customers to demand the deletion of their genetic data, highlighting the urgency for personal data security.
Prominent voices in the privacy community, including Meredith Whittaker from Signal and Eva Galperin of the Electronic Frontier Foundation, have echoed this sentiment on social media, suggesting that anyone who has used 23andMe should review their account settings immediately.
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How to Delete Your 23andMe Account
If you decide to take control of your data, follow these simple steps:
- Log in to your 23andMe account.
- Navigate to Settings > Account Information > Delete Your Account.
- Follow the on-screen prompts to confirm the deletion.
Keep in mind that according to 23andMe’s privacy policy, while your account deletion is irreversible, some data may be retained due to legal and compliance requirements. This includes basic details such as your genetic profile, date of birth, and other information deemed necessary by regulatory standards.
Additionally, if you have already consented to the use of your genetic information for research, you can revoke future consent. However, any data already contributed to research programs cannot be removed.
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The Road Ahead
With thousands of customers’ data possibly becoming a tradable asset amid 23andMe’s financial distress, the broader implications for privacy and data protection continue to mount. The situation serves as a reminder of how vital it is to understand the privacy policies of companies handling personal genetic information and to take steps to control your data.
As the company moves forward with bankruptcy proceedings and potential corporate restructuring, one thing is clear: both 23andMe’s future and the security of your genetic data remain uncertain.
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