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23andMe Bankruptcy: What Happens to Your Genetic Data and How to Delete It
about 1 year agoUS
Genetic testing company 23andMe has filed for Chapter 11 bankruptcy protection and is pursuing a sale. This development raises significant concerns among its 15 million customers regarding the privacy and future use of their highly sensitive genetic data, prompting consumer advocates and state attorneys general to issue urgent warnings.
Key Insights
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Bankruptcy and Sale: 23andMe is bankrupt and seeks a buyer, putting customer data potentially in new hands.
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Data Privacy Risk: While 23andMe's current policy restricts selling identifiable data, a new owner could change these terms. Potential buyers might include insurance companies interested in genetic information.
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Legal Uncertainty: The ownership and control of customer data during bankruptcy proceedings are legally unclear. Federal law (GINA) offers limited protection, not covering life insurance or other non-health/employment contexts.
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Official Warnings: Attorneys General in states like California and New York are urging customers to delete their data to prevent potential misuse.
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Why this matters: Your genetic data reveals deeply personal information about your health, ancestry, and potential future health risks. In the wrong hands, or under a less scrupulous company policy, this data could potentially be used in ways customers never consented to, such as influencing insurance eligibility or being shared more broadly than expected.
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.*
FAQs
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Q: Can 23andMe or a new owner sell my identifiable genetic data?
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A: 23andMe's current privacy policy states they won't sell identifiable data without consent, and this should apply post-sale. However, a new owner *could* potentially change the privacy policy in the future, though they would likely need to notify users as required by law.
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Q: What legal protections exist for my genetic data?
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A: Federal law (GINA) prevents discrimination by health insurers and employers. However, it doesn't cover life, disability, or long-term care insurance. Some states, like California (CCPA/GIPA), provide stronger rights, including deletion. The application of these laws during bankruptcy is still somewhat uncertain.
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Q: Is deleting my data guaranteed during bankruptcy?
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A: While state laws grant deletion rights, bankruptcy law introduces complexities as data might be considered part of the estate's assets. However, Attorneys General are advising consumers to exercise their deletion rights.
Key Takeaways
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Your genetic data held by 23andMe could be transferred to a new owner due to the bankruptcy sale.
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Future use of your data depends heavily on the policies of the eventual buyer, which may differ from 23andMe's current stance.
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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.
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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!*
*Share this article with others who need to stay ahead of this trend!*
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Sources & References
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Yahoo Finance: The battle for 23andMe's DNA customer data ()
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CA Attorney General: Attorney General Bonta Urgently Issues Consumer Alert for 23andMe Customers ()
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