Leaders from the House Committee on Energy and Commerce have launched an inquiry into the implications of genetic testing company 23andMe’s recent bankruptcy announcement, particularly concerning protections around customers’ personal data.
Representatives Brett Guthrie, Gus Bilirakis, and Gary Palmer, all Republicans, addressed their concerns directly to Joe Selsavage, the interim CEO of 23andMe, in a letter sent on Thursday. In it, the lawmakers posed several questions regarding how the company intends to protect and handle customer information amid potential scenarios such as a sale or transfer of data.
The representatives highlighted reports from customers facing difficulties deleting their data from the 23andMe platform, raising further alarms about the company’s management of sensitive genetic information. Additionally, they drew attention to the limited protection available to consumers, pointing out that companies offering direct-to-consumer genetic testing services like 23andMe do not fall under the rules set forth by the Health Insurance Portability and Accountability Act (HIPAA). This regulatory gap, coupled with inconsistent state-level protections, was described as deeply troubling given the sensitive nature of genetic data.
Their letter underscored these vulnerabilities: “Given the lack of HIPAA protections, the patchwork of state laws covering genetic privacy, and the uncertainty surrounding what happens to customer information should a sale of a company or customer data and information transpire, we are concerned that this trove of sensitive information is at risk of being compromised.”
23andMe, which agreed last year to settle a data breach lawsuit for $30 million, filed for Chapter 11 bankruptcy relief in March. At that time, co-founder Anne Wojcicki stepped down as CEO, indicating her intention to make a private bid to acquire the company.
