The University Record, July 6 , 1999

Citizens to tackle ethical implications of genetic research

By Shelley Coe
School of Public Health

Genetic research and technology are advancing at a dizzying pace, not only bringing hope for early detection and treatment of serious diseases, but also many ethical and policy questions. Researchers from the School of Public Health, Michigan State University and Tuskegee University are going into communities to find some of the answers.

The project, “Communities of Color and Genetics Policy,” seeks to develop policy recommendations to manage the use of genetic information and technology in society that will be derived from discussions in the broader community.

African American and Latino community members in Ann Arbor, Detroit, East Lansing, Lansing, Flint, Grand Rapids and Saginaw, and Tuskegee, Ala., will focus on such questions as:

  • Will people tested for certain genes be discriminated against by insurance companies or employers?

  • Will parents start producing designer babies or even clone themselves?

  • Who will have access to the new technology?

  • Will this new information be used to discriminate against people of color?

  • How should policy makers respond to the flood of new information and technology?

    “The project links universities, where the research is being carried out, and the communities, where the research results impact lives,” says Toby Citrin, principal investigator of the project and director of the Office of Community-Based Public Health. “It allows us to use the resources of the universities to elicit the views of the community on how research results can best address the needs of the community.”

    Funded by the Ethical, Legal and Social Implications Branch of the National Human Genome Research Institute, the project is a collaborative effort among the three universities and 12 community-based organizations.

    Citrin says the project is designed to elicit the values and concerns of groups that traditionally have been under-served and under-heard, complementing the results of an earlier project.

    “It is vital that African Americans and other people of color take part in this project, as we are often the ones who suffer most from scientific research,” says Blondeen Munson of Ann Arbor, who has been involved with the project since its inception. “Past government projects like the Tuskegee syphilis study, which allowed several hundred Black men with syphilis to go untreated for years in order to examine the disease, were permitted in the name of science. We need to be involved from the start to ensure that such atrocities never happen again.”

    Len Fleck, co-principal investigator and professor of philosophy and medical ethics at Michigan State, says the end goal of the dialogue process “is to create enough consensus in the group to shape fair and feasible policy recommendations that balance differing values.”

    “We have a unique window of opportunity for this sort of community dialogue. We as citizens are not at all certain how internal value conflicts involving genetic issues ought to be resolved, but we are open to respectful community dialogue that will help us think through the issues more carefully.”

    Following a series of five evening sessons for each of the 12 groups, representatives from each will attend regional community policy meetings with experts in ethics and policy, local legislators and other policy-makers to fine-tune the policy recommendations produced by the participants.

    “Final policy recommendations will be shared with state and federal legislators and leaders in health organizations for their use in shaping laws and professional standards relating to genetics,” Citrin says.

    The project began in March and extends through late spring 2001. For more information, contact Shelley Coe, 647-8304 or scoe@umich.edu.