Michigan Commission on Genetic Privacy and Progress

EXECUTIVE ORDER

No. 1997 - 14

MICHIGAN COMMISSION ON GENETIC PRIVACY AND PROGRESS

WHEREAS, research scientists in Michigan, across the United States, and around the world are rapidly identifying the location, composition, and function of the approximately 100,000 genes that comprise the human genome. New genes are being identified at the rate of two per week, and discoveries concerning their actions and interactions between each other and environmental factors are being made almost daily; and

WHEREAS, the new knowledge gained from genetic research has complex moral, ethical, legal, and social implications for individuals and organizations in society; the pace of this knowledge growth threatens to exceed our capacity to cope with these implications; and

WHEREAS, the genetic makeup of an individual is unique, permanent by nature, and contains a vast amount of information about the individual encoded into the DNA contained in every cell of an individual's body. Small samples of this DNA may be used to make an infinite number of copies, and further analysis of this DNA may be used to reveal personal information about the individual; and

WHEREAS, there are true benefits to be derived from genetic technology and genetic information including the ability to detect, prevent, and reduce disease and disability, the ability to identify perpetrators of violent crimes and to exonerate the innocent, and the ability to enhance the health of the public; and

WHEREAS, there are real risks related to the abuse of genetic information and genetic technology including the violation of personal privacy or discrimination in areas such as employment, health care, health care insurance, and government record keeping; and

WHEREAS, Article I, Section 2 of the Constitution of the State of Michigan of 1963 guarantees Michigan citizens the equal protection of the laws of this state and requires the Michigan legislature to implement this protection through legislation. It is a necessary and appropriate function of state government to study and develop policies to prevent genetic discrimination and to regulate the uses of genetic information.

NOW, THEREFORE, I, John Engler, Governor of the State of Michigan, pursuant to the powers vested in me by the Constitution of the State of Michigan of 1963 and the laws of the State of Michigan, do hereby order the following:A. Establishment of the Michigan Commission on Genetic Privacy and Progress:

1. The Michigan Commission on Genetic Privacy and Progress is established by this Executive Order in the Michigan Department of Community Health.

2. The Commission shall have eleven (11) voting members who shall be appointed by the Governor and who shall serve at the pleasure of the Governor. The Governor shall designate one (1) member of the Commission to serve as its chair and who shall serve as chair at the pleasure of the Governor. Members of the Commission shall attend Commission meetings in person, and shall not delegate their responsibilities to other persons.

B. Definitions:

In this Executive Order the following definitions shall apply:

1. "Commission" means the Michigan Commission on Genetic Privacy and Progress established by this Executive Order.

2. "Department" means the Michigan Department of Community Health.

3. "Human DNA" means deoxyribonucleic acid, a complex organic molecule contained in the nucleus of human cells that contains encoded information about hereditary traits.

4. "Human DNA Sample" means any human biological specimen from which Human DNA can be extracted, or Human DNA extracted from such specimen.

5. "Gene" means a unit of heredity, composed of Human DNA and located on chromosomes, that partially through interaction with other genes and environmental factors, controls the development of an hereditary trait.

6. "Genetic Analysis" means any test, assay, or other form of analysis of a Human DNA Sample used to derive information about the presence or absence of a hereditary trait of the individual or family member from whom the DNA sample was taken.

7. "Genetic Information" means information about an individual or family member derived from Genetic Analysis of a Human DNA Sample from that individual or family member.

8. "Human Genome" means the full complement of genetic material contained in human chromosomes and which remains with an individual from his or her birth until his or her death.

C. Charge to the Commission:

1. The Commission shall recommend model state statutory and administrative policies which protect the privacy of Genetic Information, prevent discrimination based upon such Genetic Information in the areas of employment, health care, health care insurance, and government record keeping, or regulate certain uses of Genetic Information so as to appropriately safeguard the interests of the people of the State of Michigan.

2. The Commission shall restrict its policy recommendations to those which are appropriate for adoption by state government. In addition, the Commission may encourage the consideration and adoption of policies consistent with those it recommends for state government by other organizations and institutions within the state.

3. The Commission shall recommend state policies concerning the collection, storage, use, and destruction of Human DNA Samples so as to protect and secure the privacy of such Human DNA Samples against abuse or misuse by any person or organization, including government.

4. The Commission shall recommend state policies concerning access to Genetic Information and the conditions for the release of Genetic Information by any person or organization, including government.

5. The Commission shall recommend state policies concerning the receiving and management of Genetic Information from any person or organization, including government, and conditions for the use of Genetic Information by such recipients.

6. No later than November 15, 1998, the Commission shall issue a final report to the Governor and the legislature containing its recommended model state policies and the rationale of the Commission supporting their adoption.

D. Operations of the Commission:

1. Members of the Commission shall serve without compensation. Members of the Commission may receive reimbursement for necessary travel and expenses according to relevant procedures of the Civil Service Commission and the Department of Management and Budget.

2. The Commission may adopt rules of procedure, not inconsistent with Michigan law and with this Executive Order, governing its organization and operations. A majority of the serving voting members constitutes a quorum for the transaction of business at a meeting, notwithstanding the existence of one (1) or more vacancies. Voting upon actions taken by the Commission shall be conducted by a majority vote of the members present in person at a meeting of the Commission. 3. The Commission shall meet at the call of the chair and as may be provided in the rules of procedure of the Commission. Meetings of the Commission may be held anywhere within the State of Michigan.

4. The Commission shall establish one or more work groups to investigate and analyze specific issues, consistent with the charge of the Commission, concerning genetic privacy and the uses of Genetic Information. The chair of the Commission or a member of the Commission designated by the chair shall be an ex officio member of each work group established by the Commission. Work groups shall recommend proposed state statutory or administrative policies to the Commission, consistent with the Commission's charge. The Commission may adopt, reject, or modify policies proposed by work groups for inclusion in its final report to the Governor and the legislature.

5. The Commission may apply for, receive, and expend monies from any source, public or private, including but not limited to gifts, grants, donations of monies and government appropriations. The Commission may also accept donations of labor, services, or other things of value from any public or private agency or person. The Commission may expend monies for its operations and contract for the services of such staff, agents, and consultants as it deems necessary to fulfill its responsibilities.

6. Prior to the first meeting of the Commission, the chair of the Commission shall notify members of the time and location of the first meeting of the Commission, establish the agenda for the first meeting, provide members of the Commission with any preparatory materials for the first meeting and make any other arrangements necessary for the start-up of the Commission.

7. The Department, or a non-profit corporation established by the Department pursuant to Act No. 264 of the Public Acts of 1989, shall provide management-related functions to the Commission including, but not limited to, contract management, personnel, accounting, and procurement services.

8. The Commission shall regularly report on its progress to the Governor or his designee.

9. The Commission shall consult with legislative committees having jurisdiction over policy areas relevant to the Commission's recommendations.

E. Miscellaneous Provisions:

1. A member of the Commission and persons acting in the name of or on behalf of the Commission shall discharge the duties of their positions in a nonpartisan manner, with good faith and with that degree of diligence, care, and skill which an ordinarily prudent person would exercise under similar circumstances in a like position.

2. All departments, boards, commissions or officers of the state or of any political subdivision of the state shall give to the Commission, or to any member or agent thereof, any necessary assistance required by the Commission, or any agent of the Commission, in the performance of the duties of the Commission so far as is compatible with its, his or her duties; free access shall also be given to any books, records or documents in its, his or her custody, relating to matters within the scope of the inquiry, study or investigation of the Commission.

3. Members of the Commission, a work group established by the Commission, and any staff, agents, or consultants to the Commission shall make themselves available to testify before the legislature, as necessary, to effect the enactment of the Commission's recommended policies into law.

The provisions of this Executive Order shall become effective upon filing.

Given under my hand and the Great Seal of the State of Michigan this ________ day of September, in the Year of our Lord, One Thousand Nine Hundred Ninety-Seven.

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GOVERNOR

BY THE GOVERNOR:

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SECRETARY OF STATE