(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 27-41-53

  • 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 §?27-19-17;

    (o)  "Healthcare facility" means an institution providing healthcare services or a healthcare setting, including but not limited to hospitals and other licensed inpatient centers, ambulatory surgical or treatment centers, skilled nursing centers, residential treatment centers, diagnostic, laboratory and imaging centers, and rehabilitation and other therapeutic health settings. See Rhode Island General Laws 27-41-2

  • 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.
  • Health maintenance organization: means a single public or private organization which:

    (1)  Provides or makes available to enrolled participants healthcare services, including at least the following basic healthcare services: usual physician services, hospitalization, laboratory, x-ray, emergency, and preventive services, and out of area coverage, and the services of licensed midwives;

    (2)  Is compensated, except for copayments, for the provision of the basic healthcare services listed in subdivision (1) of this subsection to enrolled participants on a predetermined periodic rate basis; and

    (3)(i)  Provides physicians' services primarily:

    (A)  Directly through physicians who are either employees or partners of the organization; or

    (B)  Through arrangements with individual physicians or one or more groups of physicians organized on a group practice or individual practice basis;

    (ii)  "Health maintenance organization" does not include prepaid plans offered by entities regulated under chapter 1, 2, 19, or 20 of this title that do not meet the criteria above and do not purport to be health maintenance organizations;

    (4)  Provides the services of licensed midwives primarily:

    (i)  Directly through licensed midwives who are either employees or partners of the organization; or

    (ii)  Through arrangements with individual licensed midwives or one or more groups of licensed midwives organized on a group practice or individual practice basis. See Rhode Island General Laws 27-41-2

(b)  No health maintenance organization subject to the provisions of this chapter shall:

(1)  Use a genetic test or request for genetic test 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’s 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 where 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 the information solely to carry out the purpose for which the information was disclosed. Authorization shall be required for each re-disclosure. An exception shall exist for participation in research settings governed by the federal policy for the protection of human research subjects (also known as “The Common Rule”); or

(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, protein and certain metabolites in order to detect heritable inheritable 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, and 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 or 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.

History of Section.
P.L. 1998, ch. 380, § 4; P.L. 2001, ch. 38, § 7; P.L. 2001, ch. 54, § 7.