23andMe NC customers’ data won’t go to for-profit company after bankruptcy sale approval

RALEIGH, N.C. (QUEEN CITY NEWS) – North Carolinians’ genetic data with 23andMe will not transfer to a for-profit third party, as part of a judge’s approval of the biotech company’s sale amid bankruptcy. 

NC Attorney General Jeff Jackson announced Tuesday the data will instead stay with TTAM Research Institute, a nonprofit organization created by one of 23andMe’s cofounders, former CEO Anne Wojcicki. The transfer will likely take effect in the next few weeks.

“People deserve the peace of mind that their genetic information – some of the most personal data they have – is protected,” said Jackson in a release. “I’m pleased that this data will not go to another for-profit company and that we were able to do more to protect people’s data from being used without their consent.”  

The Associated Press reports that under the terms of the agreement, TTAM will acquire all 23andMe assets, including the Personal Genome Service (PGS) and Research Services business lines and the telehealth services provider Lemonaid Health, for a purchase price of $305 million. 

The sale, which was approved by U.S. Bankruptcy Judge Brian C. Walsh on Friday, marks the end of a months-long bidding war between TTAM and Regeneron Pharmaceuticals. Wojcicki resigned as CEO in March.

Jackson sued 23andMe in June to prevent North Carolinians’ genetic data from being sold to the highest bidder and successfully helped the data from going to a for-profit company during their bankruptcy proceedings.

The court has allowed the transfer of 23andMe’s assets, including the genetic data of over 15 million people, to TTAM Research Institute. 

As part of the sale, Jackson has also reached an agreement requiring TTAM to put additional safeguards in place regarding the use and distribution of customers’ genetic data, including:   

• TTAM has committed to improving privacy policies and procedures surrounding customers’ genetic information to prevent data breaches.
• 23andMe will notify customers ahead of their genetic data being transferred to TTAM and remind them of their option have their data deleted from the service.
• Customers will retain the right to request their data be deleted whenever they choose.
• During and after the transfer, customers’ genetic data will not be exposed to anyone who didn’t already have access.
• TTAM will not sell or transfer 23andMe customers’ genetic data to a for-profit company.

All customers will be emailed in advance of the transaction closing with a notice of the sale.