Policy & Law

There are many state laws and policies that have been established about the collection and use of genetic information. These laws help to foster appropriate use of genetics technology and protect Michigan citizens. This page provides links to state laws and recommendations as well as national organizations and agencies involved in setting or analyzing policy.

Michigan Public Health Code (Act 368 of 1978) Requires the Michigan Department of Community Health to establish a chronic disease prevention and control program that includes genetic disease.

Birth Defects Act 236 of 1988 amended the Public Health Code to:		Establish a Birth Defects Registry and require reporting of diagnosed birth defects and biochemical or genetic disease.

Criminal Investigations Act 30 of 2000 amended the DNA Profiling (Act 250 of 1990) to:		Regulate the collection, retention, disposal, and disclosure of DNA samples and identification profiles used in criminal investigations.

Employment Discrimination Act 32 of 2000 (S.B. 815) amended the Persons with Disabilities Civil Rights Act (Act 220 of 1976) to:		Prevent employers from failing or refusing to hire, recruit, or promote an individual because of a disability or genetic information. Prohibit employers from requiring genetic testing and related information to be used as a condition of employment. Genetic terms used in Act 220

Governor's Commission of Genetic Privacy and Progress Report Created in November 1997 by Governor John Engler to examine specific issues in genetics and report on potential state involvement or intervention. This document contains background on genetics and the commission's specific recommendations. Ten categories of recommendations are made, including privacy, ownership, collection & use, discrimination, education, research, informed consent, and telemedicine.

Health Insurance Act 26 of 2000 amended the Nonprofit Health Care Corporation Reform (Act 350 of 1980) to:		Prevent health corporations from requiring members or applicants to undergo genetic testing or disclose genetic test results or information before issuing, renewing or continuing insurance.
Act 27 of 2000 amended the Insurance Code (Act 218 of 1956) to:		Prevent hospital, medical, or surgical policies from requiring applicants to undergo genetic testing. It does not stop an insurer from asking questions about a person's family history.

Human Cloning Act 108 of 1998 amended the Public Health Code to:		Prohibit human cloning.

Informed Consent Act 29 of 2000 (S.B. 593) amended the Public Health Code to:		Require a health care provider to obtain written informed consent from a person before presymptomatic or predictive genetic testing is done. Informed Consent Brochure

Newborn Screening Act 691 of 2002 amended the Public Health Code to:		Expand the number of treatable but otherwise disabling conditions for which newborn screening tests are performed. Designate authority for determination of testing timeframes, conditions and reporting to the state public health agency. Require a good faith effort to report positive test results to an infant's parents or guardians. Allow a fee to be charged for testing and adjusted annually based on the Detroit consumer price index.
		Develop a schedule for retention and disposal of blood specimens after tests are completed, and regulate the conditions surrounding disposal. Allow the blood specimens to be used for medical research during the retention period. Require the health department to produce an information pamphlet. Allow the health professional or birthing facility to offer to draw an additional blood specimen from the infant for future identification purposes.

Paternity Testing Act 31 of 2000 amended the Paternity Act (Act 205 of 1956) to:		Regulate the use of DNA identification profiling in paternity determinations. Regulate the use of information obtained from genetic paternity testing and retention/destruction of genetic testing material.

Genetic Information Nondiscrimination Act of 2003 Passed by the U.S. Senate (S. 1053) by a vote of 95-0 on October 14, 2003. This is the first time the Senate has passed a bipartisan genetic nondiscrimination bill. It would prevent health insurers and employers from using genetic information to determine eligibility, set premiums, or hire and fire people.

Genetic and Public Policy Center Established to be an independent and objective source of credible information on genetic technologies and genetic policies for the public, media, and policy makers.

National Conference of State Legislatures, Genetic Technologies Project Includes policy briefs and reports, genetics laws and legislative activity, information and publications on certification, cloning newborn screening, reproductive technologies and other issues.

U.S. Department of Health and Human Services, Office for Civil Rights Information on medical privacy and national standards to protect the privacy of personal health information. Includes consumer fact sheets and educational materials on the HIPAA Privacy Rule.

The U.S. Department of Energy (DOE) and the National Institutes of Health (NIH) have devoted 3% to 5% of their annual Human Genome Project (HGP) budgets toward studying the ethical, legal, and social issues (ELSI) surrounding availability of genetic information. This represents the world's largest bioethics program, which has become a model for ELSI programs around the world Human Genome Project Information.

Other Useful Links:

Association of State Territorial Health Officials (ASTHO), Genomics Impact National Human Genome Research Institute, Policy and Ethics in Genetics Research Partnership for Prevention, Harnessing Genetics to Prevent disease and Improve Health: A State Policy Guide