Rhode Island’s new genetic privacy legislation, known as the Genetic Information Privacy Act, aims to give consumers more control over their genetic data. The Rhode Island Senate passed the bill in a unanimous 37-0 vote on May 6, 2026.
The House previously approved the bill with a vote of 68-0 on April 28, 2026. This legislation seeks to regulate the direct-to-consumer genetic testing market amid rising concerns about data security and privacy violations.
Key provisions of the legislation 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 aims to ban the use of ‘dark patterns’ by genetic testing companies.
- Civil penalties for negligent violations could reach up to $1,000.
- Willful violations could incur penalties ranging from $1,000 to $10,000, plus court costs.
Sam Zurier emphasized that this law protects genetic information from being sold without consent. He 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 added that Rhode Islanders deserve transparency regarding their data sharing options.
This legislation is modeled after a California law enacted in 2021. It reflects growing public concern over how personal data is handled by companies in the genetic testing industry.
The Rhode Island Child Advocate also opposes a Department of Justice subpoena for underage patients’ medical records, highlighting ongoing debates about privacy rights and civil liberties in healthcare.
