A bill filed in the state legislature this session, called the Alabama Genetic Privacy Data Act, would require companies to get consent from consumers before sharing their genetic information with anyone else.
Currently DNA testing companies like 23andMe and Ancestry can sell customers’ data to other companies. That puts consumers at risk of having health insurers considering their genetic backgrounds when determining coverage, said the sponsor of the bill, Rep. Chip Brown, R- Mobile.
“That potentially could lead to them being discriminatory on issuing policies to certain individuals based on family histories,” he said, “And that’s something we have to protect.”
[The Health Insurance Portability and Accountability Act] 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.”
Alabama would be only the third state in the nation to require a legal process for police to use DNA without explicit consent from consumers if HB21 passes, said Jennifer Lynch, an attorney for the Electronic Frontier Foundation.
“Americans shouldn’t have to trade in their privacy rights just because they want to research their ancestry or learn about their traits and potential medical risks,” she said.
Brown said the bill would still allow law enforcement to access DNA to solve cold cases.
Olivia McCarter is co-owner of Moxxy Forensic Investigations, an Alabama-based company that uses DNA databases to help adopted family members reconnect with their biological relatives. She also works with local law enforcement agencies to help solve crimes by analyzing DNA.
She said she think the benefits of doing DNA tests outweigh the risks for consumers, and the bill is a positive effort.
“They’re going to protect your genetic information,” she said of the testing companies, “but this law or this bill will kind of enforce that protection of not selling your genetic data to a third-party company without your consent.”
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