North Carolinians’ genetic data will not transfer to a for-profit third party from 23andMe, according to Attorney General Jeff Jackson’s office.
23andMe, the genetic testing company that allows users to spit in a tube and send away the sample for a detailed DNA analysis, announced that it would be filing for bankruptcy in March. The announcement quickly raised concerns over the future of over 15 million customers’ sensitive genetic information.
Attorney General Jackson sued 23andMe in June to prevent North Carolinians’ genetic data from being sold to the highest bidder. Soon after, the court approved the transfer of 23andMe’s assets to TTAM– a nonprofit research institute– rather than a for-profit third party. The transfer will likely take effect in the next few weeks.
As part of the sale, Attorney General Jackson reached an agreement requiring TTAM to put additional safeguards in place regarding the use and distribution of customers’ genetic data, including:
- 23andMe will notify customers ahead of their data being transferred to TTAM, and customers will retain the right to delete that data.
- TTAM will not sell or transfer 23andMe customers’ genetic data to a for-profit company, nor will it be shared with any insurance company without a customer’s express authorization.
- TTAM will establish a Consumer Privacy Advisory Board to ensure that consumers’ data is being adequately protected, and TTAM will undergo annual third-party assessments of its data security.
“People deserve the peace of mind that their genetic information – some of the most personal data they have – is protected,” said Jackson. “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.”
