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
- Patients have a right to confidentiality of all records and communication. [Massachusetts General Laws Annotated Chapter 111, 70E].
- Individuals have a general right of privacy [Massachusetts General Laws Annotated Chapter 214, 1(B)]. This privacy right also covers the confidentiality of medical information.
Conditions Imposed on Genetic Testing/Use of Genetic information
- Prior written informed consent is required for genetic testing. Genetic information and reports are protected as private information; prior written consent is required for genetic testing. Records pertaining to genetic information shall be kept confidential except that research information may be used for epidemiological or clinical research conducted for the purpose of generating scientific knowledge about genes or learning about the genetic basis of disease or for developing pharmaceutical and other treatments of disease. [Massachusetts General Laws Annotated Title 16, Chapter 22, Section 70G. Genetic information and reports protected as private information; prior written consent for genetic testing]
- Massachusetts prohibits discrimination based on genetic information.
Permitted Releases of Health Information or Genetic Information for Research
- Physicians and others may disclose information under certain circumstances, including for research [Massachusetts General Laws Annotated, Chapter 112 12G).
- Massachusetts permits the use of genetic information for research. Confidential research information is defined as any results of a genetic test maintained pursuant to pharmacological and clinical research protocols which are subject to and conducted in accordance with the review and approval of an Institutional Review Board established pursuant to the provisions of 45 CFR 46 and 21 CFR 50 and 56 and that protects the confidentiality of the individual who is the subject of the genetic test either by encryption, encoding or other means consistent with the requirements of said federal regulations, or where the identity of the individual is unknown or protected from disclosure by encrypting or encoding, or by other means consistent with the requirements of said federal regulations. [Massachusetts General Laws Annotated, Title 16, Chapter 111, Section 70G].
Definition of Genetic Test/Genetic Information
Authors’ note: Two definitions are used in two different sections of the law.
“Genetic test,” a test of human DNA, RNA, mitochondrial DNA, chromosomes or proteins for the purpose of identifying genes, inherited or acquired genetic abnormalities, or the presence or absence of inherited or acquired characteristics in genetic material. For the purposes of this section, the term genetic test shall not include tests given for drugs, alcohol, cholesterol, or HIV; or any test for the purpose of diagnosing or detecting an existing disease, illness, impairment or disorder. [Massachusetts General Laws Annotated, Title 16, Chapter 111]
“Genetic test,” a test of human DNA, RNA, mitochondrial DNA, chromosomes or proteins for the purpose of identifying the genes, or genetic abnormalities, or the presence or absence of inherited or acquired characteristics in genetic material. [Massachusetts General Laws Annotated, Title 22, Chapter 176A]