Summary of State Laws
This summary of state laws does not include full citations for statutes that prohibit discrimination in employment or insurance on the basis of genetic testing or genetic information. There are other comprehensive collections of state laws addressing genetic nondiscrimination in employment and insurance. Therefore, there are complete references only where the statute is relevant for the conduct of research using tissue specimens.
Confidentiality of Health Information
- Health care information may not be released or transferred without written consent except as provided by law. [General Laws of Rhode Island Annotated, “Confidentiality of Health Care Communications and Information Act” 5-37.3].
- Patients in health care facilities have the right to privacy and confidentiality of all records pertaining to treatment except as provided by law. [General Laws of Rhode Island Annotated 23-17-19.1(6)]
Conditions Imposed on Genetic Testing/Use of Genetic information
- Rhode Island’s Confidentiality of Health Care Communications and Information Act states that confidential health care information may not be given, sold, transferred, or in any way relayed to any other person not specified in the consent form without first obtaining the subject’s additional consent. [General Law of Rhode Island Annotated 5-37.3-4(d).]
- Selling the genetic test of a current or prospective employee or licensee for an employer, employment agency, or licensing agency is prohibited. [General Laws of Rhode Island Annotated 28-6.7-1.]
- Conditions imposed on clinical genetic testing.
- Disclosures of genetic information by HMOs or insurers is prohibited.
- The use of genetic information in employment is prohibited.
Permitted Releases of Health Information or Genetic Information for Research
- Disclosures of information are permitted for to qualified personnel for the purpose of conducting scientific research, provided that personnel shall not identify, directly or indirectly, any individual patient in any report of that research, audit, or evaluation, or otherwise disclose patient identities in any manner [Rhode Island General Laws Section 5-37.3).
- Insurance administrators, health plans and providers may not release genetic information without prior written authorization of the individual except 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 of genetic tests, as are tests for somatic (as opposed to heritable) mutations, and testing for forensic purposes. [Rhode Island General Laws Section 27-1944 Section 27-19-44]
Definition of Genetic Test/Genetic Information
“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. Such 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. [Rhode Island General Laws Section 28-6.7-2.1 and 27-19-44]