Also, in March, direct-to-consumer genetic testing giant 23andMe went into Chapter 11 bankruptcy. This decision prompted an investigation by the U.S. House Committee on Energy and Commerce. The company’s financial troubles and subsequent filing have raised significant concerns regarding the safety and management of customer data, especially in light of the company’s previous data breach settlement and the absence of comprehensive federal protections for genetic information.
The particular area of interest to the House Committee is how this bankruptcy will affect the future handling of customer data. House Reps. Brett Guthrie, Gus Bilirakis and Gary Palmer, three Republicans, are leading the charge. Specifically, they sent a letter to interim CEO Joe Selsavage requesting clarity on how 23andMe will protect customer data if the company sells itself. Their exploratory questions underscore the very real dangers of such a sale. This makes it especially important as 23andMe is generally not covered by the Health Insurance Portability and Accountability Act (HIPAA).
“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,” the representatives stated.
Customers are now having trouble permanently removing their personal information from the 23andMe site. This reality adds another layer of complexity to an already difficult situation. This has brought further scrutiny due to apparent data management practices by the company. In December last year, 23andMe settled a class action data breach lawsuit for $30 million. This incident underscores major vulnerabilities in its data security protocols.
Anne Wojcicki, co-founder and CEO of 23andMe, had a very hard road. In response, she announced her resignation and her own private bid to take the company private. This development has left many stakeholders wondering about the future direction of 23andMe and its commitment to safeguarding customer information.
Although the House Committee on Energy and Commerce’s inquiry into what 23andMe’s bankruptcy means for would-be customers is ongoing, there are some lessons to be learned now. We appreciate the committee’s leaders’ commitments to protect users’ personal and sensitive data. They are working to ensure that the company’s subsequent actions will not endanger the release of this information.
Even as 23andMe looks to right itself during this stormy stretch, customers should be wary about what will happen to their genetic information going forward. What happens to the company in bankruptcy will largely determine how customer data is treated in the future.
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