Genetic Data in Limbo: What Happens to Your Info When 23andMe Files for Bankruptcy?

23andMe, the company known for turning spit into genetic insights, is in serious trouble. It has filed for bankruptcy, which means it's trying to find a buyer to fix its money problems. The company's co-founder, Anne Wojcicki, has even stepped down as CEO and tried to buy the company herself, but the board said no. This isn't the first time 23andMe has faced issues. It has been struggling for years because most people only use it once. In November, it laid off a lot of employees, about 40% of its staff. This bankruptcy news comes after a big data breach that affected nearly 7 million customer accounts. The big question now is what happens to the genetic data of its 15 million users? 23andMe says it will be an important consideration in any sale, but the truth is, federal laws don't do much to protect genetic information given to private companies. Experts say that usually, sensitive data like this is handled in hospitals or research settings, where there are more safeguards. But 23andMe has a unique amount of highly sensitive data.

For 23andMe customers, the company has two sensitive pieces of information: the saliva sample they sent in and the detailed genetic profile created from it. The company says a new owner would have to follow the law, but experts point out that there aren't many laws protecting this kind of data. The main federal laws, HIPAA and GINA, don't apply to companies like 23andMe. Some states have their own laws, but they vary. 23andMe does say it strips identifying information from data it shares with researchers, but that's about it. So, what can customers do? 23andMe is still operating during the bankruptcy, and customers can delete their data and close their accounts. Experts recommend doing just that. They also suggest asking state and federal representatives to pass stronger consumer privacy laws. Even before a sale, it's important to know what data 23andMe already shares. For example, it has been giving anonymized data to the pharmaceutical company GSK for years to help develop new drugs. So, while people worry about what a new company might do with the data, it's also important to remember what 23andMe is already doing.

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