23andMe Heads Toward Extinction

23andMe, the once buzzed-about biotech startup, is on the rocks… leaving a big question mark as to what will happen with the DNA of some 15 million customers since 2006.

Why It Hits: The seemingly inevitable fall of 23andMe (a company mostly built on customers having their DNA tested once and then moving on) may be the most high-profile case of a DTC biotech startup going under, sparking a much-needed conversation about the inherent rights around the privacy of biometric data.

Behind the Genes: When a company goes under, assets are usually sold off to pay debts… but things get a little dicier when those assets are DNA.

• State of play: Once worth $6 billion, 23andMe has lost 99% of its value, with its stock now worth pennies. Co-founder and CEO Anne Wojcicki is trying to buy the company and take it private, but those plans have caused chaos within the company.
• What’s going on with the DNA: 80% of customers allowed their DNA to be used for medical research, which it does with GSK. It anonymizes data before doing so and has also legally stonewalled law enforcement that’s tried to subpoena genetic data.
• What you can do: You can call the company to delete your data on file (but seriously, who likes calling?), but customers can’t really take back their genetic data from researchers already using it.

The Future (or lack of): 23andMe is expected to go bankrupt as soon as next year, and although Wojcicki says the company will always ensure that customers can have their data deleted, the company could hypothetically lose control of its assets. A new owner may not give those assurances. Since the company doesn’t fall under HIPAA rules, it won’t legally have to… except in California and Florida, which have specific laws to protect genetic data. If 23andMe goes under, expect every state to advance similar bills quickly.