23andMe Bankruptcy: What Happens to Your Genetic Data and How to Delete It

In-Depth Analysis

After years of struggling to establish a sustainable business model beyond initial ancestry and health reports, 23andMe's bankruptcy filing highlights the precarious nature of consumer genetic data stewardship. The company collected saliva samples and genetic information from millions, offering insights into ancestry and health predispositions. Now, this vast database is arguably its most valuable asset in a potential sale.

While 23andMe assures customers that data privacy remains a priority and current policies will apply post-sale, privacy policies *can* be changed by new owners. Experts point out that standard policy language allows for future modifications. The Genetic Information Nondiscrimination Act (GINA) prohibits discrimination by health insurers and employers based on genetic data, but it doesn't extend to life insurance, disability insurance, or long-term care insurance providers. State laws, like California's CCPA and GIPA, offer additional rights, including data deletion, but the interplay with federal bankruptcy law adds complexity.

**Who This Affects Most:** This situation directly impacts all 15 million individuals who have shared their genetic data with 23andMe, especially those concerned about long-term data privacy and potential misuse by future unknown entities.

**How to Prepare (Data Deletion Steps):** Concerned users can take steps to regain control over their information: 1. Log in to your 23andMe account. 2. Navigate to "Settings". 3. Scroll down to "23andMe Data" and click "View". 4. *(Optional)* Choose to download your data first for personal records. 5. Scroll to the "Delete Data" section and click "Permanently Delete Data". 6. Confirm the deletion via the link sent to your email. 7. Additionally, under "Settings" -> "Preferences," you can request your stored saliva sample be discarded. 8. Under "Settings" -> "Research and Product Consents," you can withdraw consent for your data to be used in research. *Note: Some users reported temporary website issues, potentially due to high traffic. Persistence may be required.*

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FAQ

Takeaways

• Your genetic data held by 23andMe could be transferred to a new owner due to the bankruptcy sale.
• Future use of your data depends heavily on the policies of the eventual buyer, which may differ from 23andMe's current stance.
• You have the right, particularly under laws like California's, to request the deletion of your genetic data and the destruction of your biological sample.
• Consider exercising your right to delete your data if you are concerned about its potential future use.

Discussion

The situation raises important questions about data ownership and privacy in the age of genetic testing. What responsibility do companies have to protect user data, especially during financial distress?

*Do you think consumer genetic data should have special protections during bankruptcy proceedings? Let us know!*

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Sources

Disclaimer

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