Genetic information - R.I. Gen. Laws Ann. § 27-20-39.1

Rhode Island defines “genetic information” as “information about genes, gene product, or inherited characteristics that may derive from the individual or a family member.”

Rhode Island prohibits insurance administrators, health plans, and providers from releasing genetic information without obtaining the individual’s written authorization. An authorization must accompany each disclosure and identify the recipient of the disclosed information. Authorization is not necessary for research governed by the “Federal Policy for the Protection of Human Research Subjects (also known as the ‘Common Rule’).” Additionally, authorization is not necessary for “tests conducted purely for research,” tests for somatic mutations, and forensic testing.

Rhode Island prohibits health insurance contracts, plans, and policies (“policies”) that cover physician services in physician offices and policies that provide “major medical or similar comprehensive-type coverage excluding disability income, long term care and insurance supplemental policies which only provide coverage for specified diseases or other supplemental policies” from: (1) using or requesting genetic tests as a means of denying, limiting, or otherwise changing the terms of a health insurance policy; (2) requesting or requiring a genetic test as a means of determining whether to renew a policy, establish copayment rates, or determine covered benefits and services; (3) release genetic information results without obtaining the individual’s written authorization (release of deidentified information is permissible). Unless governed by the Common Rule, authorized recipients must limit use of the information to specified purposes and obtain authorization for redisclosure; (4) requesting information on an individual’s past experience with genetic testing regardless of whether it occurred for clinical or research purposes.