NEWS RELEASE
February 5, 1999

Michigan Commission on Genetic Privacy and Progress Report Released

The Michigan Commission on Genetic Privacy and Progress Report was released today in Lansing. Michigan Department of Community Health Director James K. Haveman, Jr. accepted the report, on behalf of Governor John Engler, from Commission Chair Edward Goldman, J.D. Haveman also served as a member of the Commission.

The Commission was created in November of 1997 by Governor Engler to recommend to the Governor and the Legislature ways to protect genetic privacy, prevent discrimination and maximize the beneficial uses of new genetic medical knowledge. To assist the members of the Commission prepare the report, they held public forums throughout the state to hear from individuals on the important issue of genetic research.

"As I said in my State of the State address, genetic testing must not be a precondition for obtaining health insurance and must not be allowed as a precondition of employment," said Engler. "I congratulate the members of the Commission for their thoughtful and thorough review of these critical issues."

"I was pleased to serve as Chair of the Governor's Commission on Genetic Privacy and Progress," said Goldman. "The Commission was asked to investigate areas of concern in the developing field of genetics and today presents a report recommending approaches to protect the citizens of Michigan from discrimination based on their genetic make-up, from improper use of genetic samples and from other issues identified in the report."

"Governor Engler and I look forward to working with the Legislature as they review and consider this important document," said Haveman. "This report will set the foundation to shape genetic policy and legislation for Michigan's future."

General Recommendations

Advances in genetics are occurring at a rapid rate. Although the public has not indicated a strong interest in legislation in the general area of genetics, they have indicated a strong interest in privacy protection and protection from discrimination. The Commission believes that legislation should be as flexible as possible to account for the inevitable changes in technology.

Privacy

The Commission recommends that genetic information be protected just as all medical information is protected. The Commission does not recommend special protection for genetic information since the Commission feels that it is critically important to protect all medical information and it would not be useful to create a separate set of laws for genetic information. Health care professionals, employers and anyone else with access to genetic information must provide full information to a patient or consumer so that the consumer can make an informed choice before submitting to any testing.

Genetic Testing in Health Insurance and Employment

The majority of members of the Commission recommend that the Michigan Legislature prohibit health insurers from requiring predictive genetic testing of asymptomatic individuals.

Employers have justified their use of genetic testing by citing their concerns about the health and suitability of employees and applicants for their particular workplace. The Commission finds that genetic screening has not been scientifically validated as a means of predicting the onset of clinical disease and recommends that genetic testing not be relied on in assessing qualifications of an individual to perform a job. The Commission believes that employers' concerns about toxic exposures are best approached by making the workplace safe for all employees and recommends the prohibition of genetic testing or the use of genetic information as a condition of employment.

Forensic Use of DNA

In criminal investigations, the Commission recommends that if suspects are eliminated from further investigation, all of their DNA samples and records be destroyed in the presence of witnesses at a state-designated testing site.

Informed Consent

The informed consent doctrine states that health care professional may not perform invasive tests or do studies on patients without first informing them of the nature of the procedures. There is clear consensus that informed consent should generally be required for genetic testing. The Commission recommends legislation that would require that informed consent be obtained for genetic testing in most contexts. The patient must be informed of the purpose, risks and benefits of the test and given an opportunity to decline the genetic test.

Newborn Screening

The Newborn Screening program screens for seven disorders which, if left undetected and untreated, could lead to mental retardation, serious physical and neurological damage and death. The Newborn Screening program includes critical follow up treatment for infants.

The Commission recommends that parental consent not be required for newborn screening for diseases that can be accurately diagnosed and effectively treated to prevent irreversible physical and mental changes. Newborn screening should be restricted to conditions for which there is an accurate diagnosis and treatment. Testing for additional diseases should not be added to newborn screening without validation of diagnostic and treatment modalities.

Newborn screening specimens represent a vital resource for some parents in identifying missing children and in treatment of disease. The Commission recommends that newborn screening samples be retained indefinitely. However, parents should also be given the opportunity to opt out of having their newborn's screening test card used in future research.

Education

The Commission recommends the creation of educational materials for the general public and a web site to provide educational materials to the citizens of the state.

Ownership of DNA

Statutes in some states have created property rights in genetic samples and information. The Commission believes that protecting the privacy of medical information in conjunction with adequate informed consent about the uses to which samples will be put is a better mechanism for protecting individuals than creating a new property right in genetic samples or genetic information.

Members of the Michigan Commission on Genetic Privacy and Progress include:

• Edward Goldman, J.D., of the University of Michigan Health System, Ann Arbor;
• David J. Aughton, M.D., William Beaumont Hospital, Royal Oak;
• Shirley Bach, Ph.D., Western Michigan University, Kalamazoo;
• Howard Cash, President of Gene Codes Corporation, Ann Arbor;
• James K. Haveman, Jr., Director of the Michigan Department of Community Health;
• Robert Lentner, Mid-Michigan Chapter of the Huntington's Disease Society, Midland;
• Thomas Meyer, J.D., Jackson National Life Insurance Company, Lansing;
• Elizabeth Petty, M.D., University of Michigan Health System, Ann Arbor;
• Nanette Lee Reynolds, Ed.D., Director of the Michigan Department of Civil Rights;
• Sonia Suter, M.S., J.D., Greenwall Fellow, Georgetown and Johns Hopkins Universities, Washington, D.C.;
• Helga Toriello, Ph.D., Butterworth Hospital, Grand Rapids.

"I want to personally thank all the members of the Commission for their lively discussions, insightful comments and zeal to create a thorough report for the citizens of Michigan," said Goldman.

This report can be viewed on the World Wide Web at http://www.mdch.state.mi.us.

FOR IMMEDIATE RELEASE CONTACT: Geralyn Lasher
February 5, 1999 (517) 241-2112