Rhode Island has passed a significant genetic privacy legislation aimed at enhancing consumer control over genetic data. The Rhode Island Senate voted 37-0 to approve the Genetic Information Privacy Act, following a unanimous House vote of 68-0 on April 28, 2026.
The new law regulates the direct-to-consumer genetic testing market. It mandates that companies provide clear privacy policies in plain language. Consumers must now give explicit consent for the collection and use of their genetic data.
Additionally, the legislation seeks to ban the use of ‘dark patterns’ by genetic testing firms—practices that manipulate users into giving consent. Civil penalties for negligent violations could reach up to $1,000. Willful violations may incur penalties between $1,000 and $10,000, plus court costs.
This law is modeled after a California law enacted in 2021. Sam Zurier, a proponent of the bill, stated, “It protects our genetic information when we send it off to these companies so that they can’t sell it to other people.”
Edith Ajello emphasized that Rhode Islanders deserve transparency regarding their data. She said, “They should be able to opt out or request that their information be deleted.” The legislation follows growing concerns about unregulated practices in the genetic testing market and potential risks to personal data.
As this law takes effect, uncertainties remain regarding its implementation and enforcement. The Rhode Island Child Advocate has also expressed opposition to a DOJ subpoena for underage patients’ medical records, highlighting ongoing concerns about privacy rights.
