Analysis of State Laws
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.
Patients have the right to privacy during their treatment according to the Bill of Rights for Hospital Patients. The Bill of Rights requires that medical information must be kept confidential, that patients must be informed of research, that research shall be voluntary, and that patients have the right to refuse to participate in research projects. The Bill of Rights also requires permission to release information for research without written authorization. [Vermont Statutes Annotated, Title 18, Section 1852]
Individuals cannot be required to undergo genetic test except under certain circumstances (paternity, forensics, or certain insurance transactions). The results of genetic tests or the fact that a test has been conducted are protected from disclosure without the written authorization of the individual. [Vermont Statutes Annotated, Title 18, Section 9331-9334]
Discrimination in employment or insurance on the basis of genetic testing is forbidden.
[Vermont Statutes Annotated, Title 18, Section 9331-9334]
Genetic testing may not be performed on individuals or body parts of any individual nor shall any bodily materials be released for purposes of genetic testing without the prior written authorization and informed consent of the individual to be tested except for medical research where the identity of the subject is unknown or, if the research shall be conducted with anonymized medical information where individual identifiers are encrypted or encoded and the identity of the individual is not disclosed, or if the identity of the individual is known, where standards of protection are equal to those contained in regulations promulgated by the federal Office for Protection from Research Risk (OPRR). [Vermont Statutes Annotated, Title 18, Section 9332]
“Genetic information” means the results of “genetic testing” contained in any report, interpretation, evaluation, or other record thereof.
“Genetic testing” means a test, examination or analysis that is diagnostic or predictive of a particular heritable disease or disorder and is of: (i) a human chromosome or gene; (ii) human DNA or RNA; or (iii) a human genetically encoded protein.
The test for human genetically encoded protein referred to in subdivision (A)(iii) of this subdivision shall be generally accepted in the scientific and medical communities as being specifically determinative for the presence or absence of a mutation, alteration, or deletion of a gene or chromosome.
For the purposes of sections 9332 and 9333 of this title, as they apply to insurers, section 9334 of this title, and section 4727 of Title 8, and notwithstanding any language in this section to the contrary, “genetic testing” does not include: (i) a test, examination or analysis which reports on an individual’s current condition unless such a test, examination or analysis is designed or intended to be specifically determinative for the presence or absence of a mutation, alteration, or deletion of a gene or chromosome; or (ii) a test, examination or analysis of a human chromosome or gene, of human DNA or RNA, or of a human genetically encoded protein that is diagnostic or predictive of a particular heritable disease or disorder, if, in accordance with generally accepted standards in the medical community, the potential presence or absence of a mutation, alteration or deletion of a gene or chromosome has already manifested itself by causing a disease, disorder or medical condition or by symptoms highly predictive of the disease, disorder or medical condition.
[Vermont Statutes Annotated, Title 18, Section 9331]
