Overview
Between 2021-2023 alone, sixteen states introduced twenty-six bills to protect privacy in
direct-to-consumer (DTC) genetic testing. Eleven states, from California to South Dakota, have
enacted these bills, often with near-unanimous bipartisan support. Many of the bills carry a broad,
sweeping title full of promise—the Genetic Information Privacy Act. The public should not be fooled.
While the bills offer sensible and important protections, they miss the mark at fully addressing
genetic privacy concerns held by the public and many in the medical and research fields. Bipartisan
legislative interest in genetic privacy nonetheless presents great opportunity and promise to enact
more robust legislation.
This website focuses on two important aspects of genetic privacy: the use of genetic information by
life, long-term care, and disability insurers and the use by law enforcement.
To explore additional resources, please click here.
