NC Attorney General Secures Genetic Data from For-Profit Sale

RALEIGH, NC – A significant victory for personal data privacy has been achieved for North Carolina residents who shared their genetic information with 23andMe. Following intervention by Attorney General Jeff Jackson, a contentious transfer of sensitive genetic data will now proceed under enhanced protections, diverting it from a for-profit entity and instead placing it with a nonprofit research institute.

The resolution stems from a legal challenge initiated by Attorney General Jackson in June, seeking to prevent the sale of North Carolinians' genetic data to a commercial enterprise amidst 23andMe's bankruptcy proceedings. The outcome ensures that the highly personal information, encompassing that of over 15 million individuals, will transfer to TTAM Research Institute, a nonprofit established by one of 23andMe's cofounders. This transition is anticipated to finalize in the coming weeks.

Beyond securing the transfer to a non-commercial entity, the agreement also mandates new, stringent safeguards for customer data. These include commitments from TTAM to fortify privacy policies and procedures to actively deter data breaches and misuse. Customers will receive advance notification of the data transfer and be reminded of their ongoing ability to request deletion of their information. Critically, the pact stipulates that TTAM will not sell or transfer this genetic data to any for-profit company, nor will it share it with insurance providers without explicit customer consent.

Further bolstering consumer trust, TTAM will establish a Consumer Privacy Advisory Board and appoint a Chief Privacy Officer to oversee data protection. The institute will also undergo annual third-party assessments of its data security protocols and offer two years of complimentary identity theft monitoring to customers. This comprehensive framework aims to provide a greater sense of security for individuals whose deeply personal genetic information is now under the stewardship of a dedicated research organization rather than a commercial entity driven by profit motives.