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Appendix A

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.

MICHIGAN

Confidentiality of Health Information

  • Patients can refuse the release of medical records to individuals outside the health care facility, except when transferring or as required by law. [Michigan Compiled Laws 333.20201.]
  • Nonprofit health care corporations may not disclose (or redisclose) personal data, including records relating to a member’s medical history, care, treatment or service, without the prior, written, specific, informed consent of the member. [Michigan Compiled Laws Section 550.1105 (defining health care corporation); 550.1107 (defining personal data); and 550.1406]

Conditions Imposed on Genetic Testing/Use of Genetic information

Michigan requires physicians or other individuals performing presymptomatic or predictive genetic test to first obtain the written, informed consent of the test subject. The informed consent must be a signed writing executed by the test subject or the legally authorized representative of the test subject that confirms that the physician or the individual acting under the delegatory authority of the physician has explained, and the test subject or the legally authorized representative of the test subject understands, at a minimum, all of the following: (a) The nature and purpose of the presymptomatic or predictive genetic test. (b) The effectiveness and limitations of the presymptomatic or predictive genetic test. (c) The implications of taking the presymptomatic or predictive genetic test, including, but not limited to, the medical risks and benefits. (d) The future uses of the sample taken from the test subject in order to conduct the presymptomatic or predictive genetic test and the information obtained from the presymptomatic or predictive genetic test. (e) The meaning of the presymptomatic or predictive genetic test results and the procedure for providing notice of the results to the test subject. (f) Who will have access to the sample taken from the test subject in order to conduct the presymptomatic or predictive genetic test and the information obtained from the presymptomatic or predictive genetic test, and the test subject’s right to confidential treatment of the sample and the information. [Michigan Compiled Laws 333.17520).

Information regarding clinical genetic tests may not be disclosed [Michigan Compiled Laws 712.13].

Permitted Releases of Health Information or Genetic Information for Research

Medical information

A person participating in a designated medical research project may not disclose the information obtained except in strict conformity with that project. Information may be provided to medical research projects and is not considered to be the willful betrayal of a professional secret or the violation of a confidential relationship. [Michigan Compiled Laws Annotated, Section 333.2633]

Definition of Genetic Test/Genetic Information

“Genetic information” means information about a gene, gene product, or inherited characteristics of an individual derived from the individual’s family history or a genetic test. [Michigan Compiled Laws Annotated, Section 37.1201]

“Genetic test” means the analysis of human DNA, RNA, chromosomes, and those proteins and metabolites used to detect heritable or somatic disease-related genotypes or karyotypes for clinical purposes. A genetic test must be generally accepted in the scientific and medical communities as being specifically determinative for the presence, absence, or mutation of a gene or chromosome in order to qualify under this definition. Genetic test does not include a routine physical examination or a routine analysis, including, but not limited to, a chemical analysis, of body fluids, unless conducted specifically to determine the presence, absence, or mutation of a gene or chromosome (c) “Predictive genetic test” means a genetic test performed for the purpose of predicting the future probability that the test subject will develop a genetically related disease or disability. (d) “Presymptomatic genetic test” means a genetic test performed before the onset of clinical symptoms or indications of disease. (9) For purposes of subsection (8)(b), the term “genetic test” does not include a procedure performed as a component of biomedical research that is conducted pursuant to federal Common Rule under 21 C.F.R. Parts 50 and 56 and 45 C.F.R. Part 46. [Michigan Compiled Laws Annotated, 37.1201 and 333.17520 and 500.3407b]

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Section Last Updated: 08/16/07