RALEIGH – Today, Attorney General Jeff Jackson announced that North Carolinians’ genetic data with 23andMe will not transfer to a for-profit third party, instead staying with TTAM Research Institute, a nonprofit organization created by one of 23andMe’s cofounders. He has also successfully secured additional safeguards for people’s data. 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 Attorney General Jeff 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.”
Attorney General Jackson sued 23andMe in June to prevent North Carolinians’ genetic data from being sold to the highest bidder and successfully helped prevent 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, Attorney General 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 and material to prevent data breaches and other abuse of consumer information.
- 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.
- TTAM will not sell or share customers’ genetic data with any insurance company without a customer’s express authorization.
- TTAM will establish a Consumer Privacy Advisory Board and designate a Chief Privacy Officer to ensure consumers’ data is being adequately protected.
- TTAM will undergo annual third-party assessments of its data security.
- TTAM will offer customers two years of complimentary identity theft monitoring.
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