Rhode Island’s new Genetic Information Privacy Act aims to give consumers more control over their genetic data amidst growing concerns about data security. The Rhode Island Senate passed the bill with a unanimous 37-0 vote, following a similar outcome in the House, which voted 68-0 on April 28, 2026.
This legislation responds to the unregulated nature of the genetic testing market, which has raised alarms about privacy and data misuse. It specifically targets companies offering direct-to-consumer genetic testing, like 23andMe and Ancestry.com.
Key provisions of the law include:
- Genetic testing firms must provide privacy policies in plain language.
- Consumers must give explicit consent for the collection and use of their genetic data.
- The law seeks to ban deceptive practices known as ‘dark patterns’ used by some companies.
- 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.
Sam Zurier, a key advocate for the bill, emphasized its importance by stating, “It protects our genetic information when we send it off to these companies so that they can’t sell it to other people.” Meanwhile, Edith Ajello added that “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.”
The legislation is modeled after a California law from 2021 and reflects a growing trend towards stronger consumer protections in the digital age. However, uncertainties remain regarding how effectively these measures will be enforced and whether they will adapt as technology evolves.
