Does 23andMe Sell Your Data? What Policies Say and How to Opt Out

When you sign up for 23andMe, you might think your genetic data stays private, but that's not always guaranteed. The company’s privacy policy allows for some data sharing situations—including the possibility of your information being sold if 23andMe goes bankrupt. You do get some control over what happens with your genetic data, but the fine print can surprise you. Before thinking your DNA is locked away, you’ll want to know what choices you're actually making.

What 23andMe’s Privacy Policy Says About Data Sales

23andMe's privacy policy indicates potential risks associated with the sharing of genetic data, particularly in the event of the company's bankruptcy. Specifically, if the company were to face bankruptcy proceedings, it may sell user data, assuming the individual provided consent at the time of account creation. Users may have consented to such terms by agreeing to the terms of service, which may include a checkbox for data sharing.

While 23andMe emphasizes the importance of genetic privacy by regulating what information is shared, the policy suggests that genetic data could be vulnerable during bankruptcy scenarios, contingent upon user consent and applicable state laws.

Although users have the option to delete their data, changes in ownership of the company may lead to alterations in data handling practices. Furthermore, health insurance protections related to genetic information aren't guaranteed, emphasizing the importance of regularly reviewing the privacy policy to remain informed about any developments that could affect data security and privacy.

The Impact of Bankruptcy on Your Genetic Information

Understanding the implications of a company's bankruptcy on your genetic data is important, particularly in the case of a company like 23andMe. If 23andMe files for bankruptcy, it's possible that your genetic information and personal data may be sold to settle outstanding debts. This could result in these data being transferred to third parties that you hadn't consented to share your information with.

The privacy policy that users agree to upon using the service typically includes provisions that allow the company to sell data in bankruptcy situations. This means that even if state privacy laws exist, a bankruptcy court may approve the transfer of consumer data regardless of those laws.

Although the Genetic Information Nondiscrimination Act (GINA) provides some protection against the misuse of genetic information, it's limited in scope and doesn't fully safeguard consumer privacy.

Federal regulations concerning data protection are also minimal, underscoring the importance of being informed about your rights and available options regarding your personal data. Awareness of these factors is essential for individuals considering utilizing genetic testing services.

Steps to Delete Your 23andMe Account and Data

To remove your information from 23andMe, the platform offers a clear procedure for account deletion.

To initiate this process, you need to log in to your account, go to “Settings,” and locate the “23andMe Data” section, where you can request the deletion of your account.

After submitting the request, you'll be required to confirm it via an email to finalize the account closure.

It is important to note that, as outlined in the privacy policy, certain genetic data may be retained for legal or regulatory purposes even after you have opted to delete your information.

Additionally, if you wish to dispose of your saliva sample, this requires a separate request.

Consumer advocates advise that you review the informed consent information provided by 23andMe prior to deleting any personal data to fully understand the implications of your decision.

If You Keep Your Account: How to Limit Data Sharing

Maintaining control over the sharing of your genetic information while using your 23andMe account is achievable through several practical measures.

You have the option to opt out of research participation at the initial setup of your account or later by accessing the account's Settings. Within this section, you can modify your user preferences to limit data sharing according to the terms outlined in the privacy policy.

It is important to note that your genetic data from DNA test reports isn't automatically shared. You have the discretion to determine when and with whom this information is disclosed.

Additionally, for heightened privacy, you may request the disposal of your saliva sample, which ensures that no residual genetic material is kept by the company.

Regular review and updating of your privacy settings are advisable, as any changes made will only influence future data sharing practices. This allows you to maintain ongoing oversight of your genetic information and its usage.

Legal Protections and Risks for Your Genetic Data

Privacy settings give users some level of control over their genetic data, but several legal aspects significantly affect how 23andMe manages this information. According to its privacy policy, 23andMe may sell consumer data in the event of bankruptcy, creating a scenario in which new ownership could alter data handling practices.

Federally, the Genetic Information Nondiscrimination Act (GINA) provides protection against the use of genetic information by health insurers. However, it doesn't extend to life insurance, leaving a potential gap in consumer protections.

In California, residents are afforded rights under the California Consumer Privacy Act (CCPA), which permits individuals to delete their personal data. Nevertheless, these rights could be overridden in a bankruptcy situation.

The Health Insurance Portability and Accountability Act (HIPAA) doesn't apply to 23andMe, leading to significant deficiencies in the protection of both genetic and personal health information when compared to entities that are covered by HIPAA provisions.

Thus, individuals considering the use of genetic testing services should be aware of these legal limitations and potential risks to their genetic data.

Conclusion

When you use 23andMe, it’s up to you to manage your privacy. The company’s policies let them share or even sell your data under certain circumstances, including bankruptcy. You do have options—review your privacy settings, opt out of research, or fully delete your account and saliva samples if you want to protect your information. Stay proactive and aware, because ultimately, you’re the best guardian of your own genetic privacy.