AL.com: Alabama lawmakers look to protect DNA sent to genealogy sites 

March 19, 2024

HIPAA, a federal law that protects health information, does not apply to the use of the DNA consumers send in with their test kits, although many people wrongly assume that it will, said Suzanne Bernstein, a law fellow with the Electronic Privacy Information Center. 

“There’s this whole shadow industry that exists in the dark that we call a commercial surveillance ecosystem,” she said, adding that data brokers sell data on people that is collected and analyzed. 

There is not federal protection against the selling of DNA data, said Bernstein. Anyone can buy the information, she said, calling the situation “dystopian.” 

Read more here.

Support Our Work

EPIC's work is funded by the support of individuals like you, who allow us to continue to protect privacy, open government, and democratic values in the information age.

Donate