PROVIDENCE – A new law will help ensure that Rhode Island consumers retain control over their own genetic information when they use genetic testing companies, according to the state legislators who sponsored the measure.
The Genetic Information Privacy Act, which was signed by Gov. Daniel J. McKee, requires consumer genetic testing companies to obtain express consent from customers 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.
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“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 Sen. Samuel D. Zurier, D-Providence, who sponsored the legislation. “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 new law, which has already taken effect, 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.
“Genetic data warrants protections similar to 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 Rep. Edith H. Ajello, D-Providence, a bill’s primary sponsor in the House. “Our state laws need this update to protect the many consumers who use any of the widely available DNA testing services.”
The law also requires 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.
Since 2020, more than a dozen states have enacted consumer genetic privacy laws. The Rhode Island law was modeled after a California law passed in 2021.
The measure was supported by the American Civil Liberties Union of Rhode Island Inc., as well as Ancestry.com.
