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4/28/2026
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House OKs Rep. Ajello’s bill to protect privacy of consumers’ genetic information
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STATE HOUSE — The House today approved legislation sponsored by Rep. Edith H. Ajello to ensure that Rhode Islander consumers retain control over their own genetic information when they use genetic testing companies.
“Genetic data warrants the same protections as the rest of our personal medical information. Rhode Islanders deserve to know if their data might be shared or sold, and they should be able to opt out or request that their information be deleted, particularly in cases where the entity holding it changes hands,” said Representative Ajello (D-Dist. 1, Providence). “Our state laws need this update to protect the many consumers who use any of the widely available DNA testing services.”
The Genetic Information Privacy Act (2026-H 7639) 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.
The bill would also require genetic testing companies to, upon request, delete customer genetic data from their database and destroy their biological samples, and close customer accounts without unnecessary steps.
The legislation, which is being sponsored in the Senate (2026-S 2203) by Sen. Samuel D. Zurier (D-Dist. 3, Providence), addresses an issue that came to light with the bankruptcy of the genetic testing company 23andMe. Consumer advocates raised concerns that the company’s database of genetic information would be a valuable asset in the bankruptcy and that a 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.
Since 2020, more than a dozen states have enacted consumer genetic privacy laws. Representative Ajello’s bill is modeled after a California law passed in 2021.
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 House Judiciary Committee.
The bill now heads to the Senate for consideration.
For more information, contact:
Meredyth R. Whitty, Publicist
State House Room 20
Providence, RI 02903
(401) 222-1923
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