(a) Except as provided in chapter 37.3 of title 5, insurance administrators, health plans and providers shall be prohibited from releasing genetic information without prior written authorization of the individual. Written authorization shall be required for each disclosure and include to whom the disclosure is being made. An exception shall exist for those participating in research settings governed by the Federal Policy for the Protection of Human Research Subjects (also known as “The Common Rule”). Tests conducted purely for research are excluded from the definition, as are tests for somatic (as opposed to heritable) mutations, and testing for forensic purposes.
Terms Used In Rhode Island General Laws 27-18-52. Genetic testing
- contract: A legal written agreement that becomes binding when signed.
- covered benefits: means coverage or benefits for the diagnosis, cure, mitigation, treatment, or prevention of disease, or amounts paid for the purpose of affecting any structure or function of the body including coverage or benefits for transportation primarily for and essential thereto, and including medical services as defined in R. See Rhode Island General Laws 27-18-1.1
- guardian: A person legally empowered and charged with the duty of taking care of and managing the property of another person who because of age, intellect, or health, is incapable of managing his (her) own affairs.
(b) No individual or group health insurance contract, plan, or policy delivered, issued for delivery, or renewed in this state which provides health insurance medical coverage that includes coverage for physician services in a physician’s office, and every policy which provides 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, shall:
(1) Use a genetic test or request for genetic tests or the results of a genetic test to reject, deny, limit, cancel, refuse to renew, increase the rates of, affect the terms or conditions of, or affect a group or an individual health insurance policy, contract, or plan;
(2) Request or require a genetic test for the purpose of determining whether or not to issue or renew an individual’s health benefits coverage, to set reimbursement/co-pay levels or determine covered benefits and services;
(3) Release the results of a genetic test without the prior written authorization of the individual from whom the test was obtained, except in a format whereby individual identifiers are removed, encrypted, or encoded so that the identity of the individual is not disclosed. A recipient of information pursuant to this section may use or disclose this information solely to carry out the purpose for which the information was disclosed. Authorization shall be required for each redisclosure; an exception shall exist for participating in research settings governed by the Federal Policy for the Protection of Human Research Subjects (also known as “The Common Rule”).
(4) Request or require information as to whether an individual has ever had a genetic test, or participated in genetic testing of any kind, whether for clinical or research purposes.
(c) For the purposes of this section, “genetic testing” is the analysis of an individual’s DNA, RNA, chromosomes, proteins and certain metabolites in order to detect heritable disease-related genotypes, mutations, phenotypes or karyotypes for clinical purposes. Those purposes include predicting risk of disease, identifying carriers, establishing prenatal and clinical diagnosis or prognosis. Prenatal, newborn and carrier screening, as well as testing in high risk families may be included provided there is an approved release by a parent or guardian. Tests for metabolites are covered only when they are undertaken with high probability that an excess of deficiency of the metabolite indicates the presence of heritable mutations in single genes. “Genetic testing” does not mean routine physical measurement, a routine chemical, blood, or urine analysis or a test for drugs or for HIV infections.
(P.L. 1998, ch. 380, § 1; P.L. 2001, ch. 38, § 1; P.L. 2001, ch. 54, § 1; P.L. 2002, ch. 292, § 33.)