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5/5/2026
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Senate approves 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.
“The privacy of our personal genetic data is only as good as the policies of the companies holding it, and those policies can change at a moment’s notice,” said Senator Zurier (D-Dist. 3, Providence). “Rhode Islanders deserve to have control over their personal genetic information, to both know that it will be held securely even if the direct-to-consumer testing company holding it goes bankrupt or is sold and to be able to easily request that it be deleted if they are no longer comfortable with the company holding that data.”
The Genetic Information Privacy Act (2026-S 2203) 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 first introduced this legislation last year after reading about financial troubles 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 bankruptcy and that the buyer of this database could use the data in ways 23andMe customers did not intend or expect. A bankruptcy judge last year approved the sale of the company’s assets to a nonprofit entity led by 23andMe’s founder, who pledged to maintain the company’s data-use policies, an outcome Senator Zurier described as a “catastrophe avoided by good luck.”
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 the American Civil Liberties Union of Rhode Island as well as Ancestry.com, both of which submitted testimony in support of the legislation to the Senate Commerce committee.
The bill now heads to the House for consideration, where companion legislation (2026-H 7639) from Rep. Edith H. Ajello (D-Dist. 1, Providence) passed April 28.
For more information, contact:
Tristan Grau, Publicist
State House Room B20
Providence, RI 02903
401.222.4935
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