Congress Investigates 23andMe Bankruptcy: Key Questions and Implications for Genetic Testing Industry
The recent bankruptcy filing of 23andMe has raised significant concerns regarding the protection of customer data. The leaders of the House Committee on Energy and Commerce are currently investigating how this situation might impact the sensitive information of customers who have utilized the genetic testing services offered by 23andMe.
Investigation into 23andMe’s Data Management
On Thursday, Representatives Brett Guthrie, Gus Bilirakis, and Gary Palmer—all members of the House Committee—sent a formal letter to Joe Selsavage, the interim CEO of 23andMe. The letter contained several critical inquiries regarding the company’s plans for customer data management in the event of a potential sale.
Customer Data Concerns
Among the concerns raised, the representatives highlighted reports from customers who have encountered difficulties when attempting to delete their personal data from the 23andMe website. This issue is particularly alarming considering that companies like 23andMe generally do not fall under the protections of the Health Insurance Portability and Accountability Act (HIPAA).
- HIPAA Protections: Most direct-to-consumer genetic testing companies, including 23andMe, are not protected by HIPAA.
- State Laws: The existing state laws covering genetic privacy are inconsistent, creating a patchwork of regulations.
- Risk of Data Compromise: There is a significant risk that sensitive information could be compromised during the sale of the company or customer data.
In their letter, the representatives expressed their deep concern about the potential vulnerabilities faced by customers. They stated, “Given the lack of HIPAA protections and the uncertainty surrounding what happens to customer information should a sale transpire, we are worried that this trove of sensitive information is at risk of being compromised.”
Background on 23andMe’s Bankruptcy
23andMe, known for its pioneering role in providing genetic testing services, filed for Chapter 11 bankruptcy in March. This filing came shortly after the company settled a data breach lawsuit for $30 million in the previous year. Following the bankruptcy announcement, co-founder and CEO Anne Wojcicki resigned, indicating her intention to become a private bidder for the company.
As the investigation unfolds, customers and stakeholders alike will be watching closely to see how 23andMe addresses these significant data privacy concerns.
For more information on genetic privacy and consumer rights, visit the Privacy Rights Clearinghouse.
