DNA for Sale 🧬: 23andMe's Bankruptcy Puts Your Genetic Data on the Block

When a company dies, your DNA lives on – in someone else's database...

🎯 WHY IT MATTERS:

Genetic testing giant 23andMe's bankruptcy filing puts the genetic data of 15 million customers at risk of being sold to the highest bidder. The company that once promised to help you discover your ancestry might now be discovering how to monetize your most personal data. Talk about a biological identity crisis! 💸

🔑 KEY POINTS:

• 23andMe announced it filed for Chapter 11 bankruptcy last week and "Intends to Conduct a Value-Maximizing Sale Process" (basically saying "we’re going to sell everything!")

• This comes after a 2023 data breach that exposed the ancestry data of almost 7 million users and their value tanking by 99% from its peak of $6 billion (ouch!)

• 23andMe isn't subject to HIPAA, leaving US customers with no federal protection, while EU customers benefit from GDPR's stronger safeguards

• Without HIPAA, the company's data handling is basically only subject to its own privacy policies – those "trust us" agreements nobody reads that can be changed whenever they want

• 23andMe's terms explicitly state customer data "may be accessed, sold or transferred" during bankruptcy proceedings (shocker!) and of course, the new owners privacy policies will apply (who knows what’ll be in there)

• The company pivoted from drug development to marketing customer data to pharmaceutical companies. Apparently, your DNA is worth more than their drug pipeline

🖼️ THE BIG PICTURE:

This case exposes the massive disconnect between how we (should) view our genetic data (deeply personal) and how companies treat it (corporate/tradable asset). While most customers viewed their DNA submission as a one-time transaction for ancestry insights, they had concept that that could be entering a relationship with whoever ends up buying their DNA data at a bankruptcy fire sale. 📊

👉 THE BOTTOM LINE:

What started as innocent curiosity about your heritage evolved into a cautionary tale about data ownership. And we’re not talking your work e-mail, we’re talking your DNA. Jut a few years ago, millions of people happily swabbed their cheeks and sent it to a company who’s interest were clearly their own profitability. At now all that data become bankruptcy collateral. And no, reading the T&Cs or privacy policy wouldn’t have helped much in this case because even if they didn’t explicitly state they can sell and even if it didn’t, given the lack of regulation in the US, they could have changed it whenever they wanted.

👀 WHAT’S NEXT

• Users are urged to delete their accounts before the sale, though 23andMe will still retain some data "for compliance purposes" (how convenient!). EU users can make stronger legal demands for complete erasure under GDPR. To delete your account - Log in to your 23andMe account and navigate to Settings > Account Information > Delete Your Account.

• The bankruptcy sale will determine who gets access to this genetic goldmine – pharmaceutical companies, insurance firms, or maybe that creepy data broker?

• Maybe this case finally gets federal privacy legislation in the US moving? Let’s not hold our breath

• The 80% of users (12 million people) who consented to research use of their data face an uncertain future, with EU citizens retaining the right to withdraw consent.

• Maybe people will think twice before sharing their data with companies who clearly don’t prioritise your privacy over their profit. Regardless of how they “take your privacy seriously”

🏊‍♀️ GO DEEPER

23andMe Press Release

TechCrunch Article

Reuters Article