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Bankrupt and Exposed: The Future of Your Genetic Data After 23andMe’s Fall

  • Writer: Heidi Gross
    Heidi Gross
  • Apr 13
  • 3 min read


In March 2025, 23andMe, a pioneer in direct-to-consumer genetic testing, filed for Chapter 11 bankruptcy NPR. This development has raised significant concerns about the fate of the sensitive genetic data of over 15 million customers WSJ. As the company seeks a buyer, questions arise about data privacy, ownership, and the potential misuse of genetic information. This article explores the implications of 23andMe's bankruptcy on personal data and the broader context of genetic data privacy.​


The Value and Vulnerability of Genetic Data

Genetic data is among the most personal information individuals can share. It contains insights into ancestry, health predispositions, and familial connections. For companies like 23andMe, this data is a valuable asset. Experts suggest that such extensive datasets are highly sought after by pharmaceutical companies and AI firms aiming to develop personalized medicine and advanced algorithms Time.​

However, the value of this data also makes it a target for misuse. In 2023, 23andMe experienced a significant data breach, compromising the personal information of nearly 7 million users . This incident underscores the vulnerabilities associated with storing vast amounts of sensitive genetic information.​WSJ+5Verywell Health+5Time+5NPR+4Investopedia+4Time+4


Legal Protections and Limitations

In the United States, the legal framework for protecting genetic data is fragmented. While the Health Insurance Portability and Accountability Act (HIPAA) safeguards medical records, it does not extend to genetic data held by companies like 23andMe . The Genetic Information Nondiscrimination Act (GINA) prohibits discrimination based on genetic information but does not restrict how companies collect, store, or share such data.​Investopedia+1WSJ+1

Some states have enacted laws to address these gaps. For instance, California's Consumer Privacy Act (CCPA) and Washington's My Health My Data Act grant residents rights to access and delete their personal data Axios. However, these protections vary by state and may not apply uniformly to all consumers.​


The Impact of Bankruptcy on Data Ownership

Bankruptcy proceedings introduce additional complexities regarding data ownership. In Chapter 11 cases, a company's assets, including customer data, can be sold to satisfy creditors. While 23andMe has stated that customer privacy will be a priority in any sale, the company's privacy policy allows for the transfer of personal data in the event of a merger, acquisition, or bankruptcy 23andMe Customer Care.​

The appointment of a consumer privacy ombudsman during bankruptcy proceedings can provide oversight. This role involves reviewing the company's privacy policies and advising the court on the implications of data transfers. However, the appointment is not mandatory and depends on the court's discretion WSJ.​


Steps Consumers Can Take

Given the uncertainties, consumers concerned about their genetic data should consider the following actions:

  1. Review Privacy Settings: Log into your 23andMe account and review your privacy preferences. Adjust settings to limit data sharing.​

  2. Download Your Data: Before deleting your account, download a copy of your genetic data for personal records.​Investopedia+3NPR+3WSJ+3

  3. Delete Your Data: Navigate to the "Settings" section of your 23andMe account, select "23andMe Data," and follow the prompts to permanently delete your data .​WSJ+1NPR+1

  4. Destroy Biological Samples: If you previously consented to 23andMe storing your saliva sample, request its destruction through your account settings.​New York Post+5WSJ+5McCarter & English, LLP+5

  5. Stay Informed: Monitor updates from 23andMe and relevant legal authorities regarding the bankruptcy proceedings and potential data transfers.​


The Broader Implications

The 23andMe bankruptcy highlights the need for comprehensive federal legislation addressing genetic data privacy. As technology advances and the collection of personal data becomes more prevalent, robust legal frameworks are essential to protect individuals' rights. Without such protections, consumers remain vulnerable to the misuse of their most intimate information.​Wikipedia, la enciclopedia libreInvestopedia


Conclusion

The bankruptcy of 23andMe serves as a cautionary tale about the complexities of genetic data privacy in the modern era. While the company has assured customers of its commitment to data protection, the legal landscape offers limited guarantees. Consumers must take proactive steps to safeguard their information and advocate for stronger privacy laws to ensure their genetic data remains secure.​WSJInvestopedia


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