One of the world’s largest DNA collections in private hands, ancestry testing company 23AndMe with over 14 million genotypes, seems headed for a chaotic ownership change after CEO Anne Wojcicki warned of incoming bankruptcy and the entire board quit.
While 23andMe’s genetic tests can sometimes provide useful history for some genetically-linked medical conditions, the vast majority of people who willingly sent their saliva to the company were merely seeking to get an analysis of their ancestors heritage for curiosity or entertainment.
The company’s bankruptcy is perhaps not a huge surprise as there is no repeat model for DNA testing – once it’s done it’s done – and the company may have exhausted the supply of willing testers. But the DNA bank’s exclusion from HIPAA, the lack of state laws in most states outside of California (which has a genetic privacy law) and the company’s definition of the DNA in its possession as a salable asset, make the internal crisis a privacy disaster for millions of people with large and measurable risks.
How can you protect yourself if you went for the DNA testing game?
If you live in California, under the Genetic Information Privacy Act (2021), you have an absolute right to delete your data and the companies must comply within 30 days. If 23andMe was your tester, you should do that right now, and even if you used a different company (like Ancestry.com, now owned by global private equity firm The Blackstone Group), you should still exercise your right of deletion.
Once you have your test results, the purpose of your submission is complete and there is no reason to let a private company hold your DNA as a salable asset. In addition to yourself, your DNA sample also contains information about others who share your bloodline who may have no knowledge and have never consented to the delivery of DNA information to a private corporation.
Do not delay. The situation at 23AndMe is urgent and transfer could occur at any time. Here are the steps to delete your information from the 23AndMe DNA bank prior to its sale:
Sign into 23andMe.com
Click “Settings”
Scroll down to “23andMe Data” and click on “View.”
Scroll down to “Delete Data”
Click on the red “Permanently Delete Data” button.
Open your email to find the confirmation from 23andMe
Check your spam folders if you can’t find it
Press the “Permanently Delete All Records” button in the email
The email link expires after 24 hours, so make sure to complete both parts or you will have to start all over again
Tell everyone you know who participated in the ancestry testing craze to do the same!