Establishes the Genetic Information Privacy Act, which would require a direct-to-consumer genetic testing company, as defined, to provide a consumer with certain information regarding the company’s policies and procedures regarding use of genetic data.
S0767 establishes the Rhode Island Genetic Information Privacy Act, creating a new chapter in the commercial law title to regulate direct-to-consumer genetic testing companies. The bill requires these companies to provide clear, plain-language privacy notices and to obtain express, separate consent before collecting, using, storing, transferring, or disclosing a consumer’s genetic data or biological sample for specified purposes. It also requires companies to offer consumers ways to access their data, delete their account and genetic data, revoke consent, or have biological samples destroyed, and it restricts the use of dark patterns to obtain consent.
The bill also limits disclosure of genetic data to entities involved in health, life, long-term care, disability insurance, or employment decisions, with narrow exceptions, and bars discrimination against consumers for exercising rights under the act. It sets civil penalties for negligent and willful violations, gives enforcement authority exclusively to the attorney general, and provides that penalties recovered are paid to the affected individual. The act includes conflict-of-law language favoring the strongest privacy protection and contains exclusions for HIPAA-covered medical information, certain health care providers and business associates, nonprofit research institutions, newborn screening, diagnostic tests handled like medical information, and workplace safety uses.
The general sentiment reflected in the available record is strongly supportive: the bill passed the Senate unanimously, 35-0, indicating broad bipartisan agreement on the need for stronger genetic privacy protections. The bill’s findings frame direct-to-consumer genetic testing as an area of growing concern because of the sensitivity, stability, and identifiability of genomic data, which likely contributed to the favorable reception.
There is little direct evidence of controversy in the provided materials, but the main policy tension is between consumer privacy and the operational use of genetic data by testing companies, researchers, and third parties. The bill’s detailed consent requirements, limits on marketing and disclosure, and restrictions on insurance and employment-related access may be viewed as burdensome by industry stakeholders, while the research and health-care exclusions appear designed to preserve established medical and scientific uses of genetic information. No committee testimony or recorded opposition was provided.
This bill would add a new chapter to Title 6 governing direct-to-consumer genetic testing companies in Rhode Island, imposing privacy, consent, security, disclosure, and anti-discrimination requirements for genetic data and biological samples. It would create enforceable duties for companies, establish civil penalties and attorney general enforcement, and set out statutory exclusions and conflict rules that preserve stronger protections under other privacy laws.
The available voting history shows overwhelming support, with the Senate passing the bill 35-0 on May 8, 2025. No committee transcript or recorded opposition was provided, and the bill’s findings and structure suggest a consensus in favor of protecting consumers from misuse of genetic data.
The principal areas of potential contention are the bill’s limits on how direct-to-consumer genetic testing companies may collect, use, market, share, and retain genetic data, and its prohibition on disclosure to entities involved in insurance or employment decisions. Industry stakeholders could view the express-consent and deletion requirements as operationally restrictive, while researchers and health-care actors may be attentive to the scope of the bill’s exclusions. The bill attempts to reduce friction by carving out HIPAA-covered information, nonprofit research, and certain diagnostic and workplace-safety uses.