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5/8/2025
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Senate OKs Sen. Zurier bill to protect customer’s genetic privacy
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STATE HOUSE — The Senate today approved legislation from Sen. Samuel D. Zurier to ensure that Rhode Islander consumers retain control of their genetic data at all times.
“Our personal genetic data deserve the same protections we have for our personal medical information,” said Senator Zurier (D-Dist. 3, Providence). “Rhode Islanders should be confident that their genetic information is being held securely and will continue to be even if the testing company they submitted it to goes bankrupt or is sold. They should also be able to easily request that their information is deleted if they are no longer comfortable with a direct-to-consumer testing company holding that data.”
The Genetic Information Privacy Act (2025-S 0767) would require consumer genetic testing companies to obtain express consent concerning the specific permitted uses of their genetic data, ensure that the company and any others who receive the data take reasonable measures to protect the privacy of the customers who provide the data and develop clear practices and procedures to ensure compliance with these requirements.
Senator Zurier introduced this legislation after reading about financial difficulties at the genetic testing company 23andMe in September 2024. He shared the concerns of customer advocates that the company’s database of genetic information could be a valuable asset in the event of a bankruptcy and that the buyer of this database could use the data in ways 23andMe customers did not intend or expect.
23andMe filed for bankruptcy on March 23, only heightening these concerns and making clear the urgent need for swift legislative action.
The bill would also require genetic testing companies to, upon request, delete customer genetic data from their database and close customer accounts without unnecessary steps and to delete their biological samples.
The bill is modeled after a California law passed in 2021. Alabama, Delaware, Illinois and Nebraska passed similar legislation in 2024, joining at least 10 other states with existing consumer genetic privacy laws on the books.
The bill is supported by Ancestry.com, which submitted testimony in support of the legislation to the Senate Commerce committee.
The bill now heads to the House for consideration.
For more information, contact:
Tristan Grau, Publicist
State House Room B20
Providence, RI 02903
401.222.4935
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