Communities to tackle ethical implications of genetic research

June 8, 1999

ANN ARBOR—Genetic research and technology are advancing at a dizzying pace, bringing hope for early detection and treatment of serious diseases, but also many ethical and policy questions. Researchers at the University of Michigan School of Public Health, Michigan State University, and Tuskegee University are going to communities to find answers.
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?
These and other questions will be addressed in forums planned for the Ann Arbor, Detroit, East Lansing, Lansing, Flint, Grand Rapids and Saginaw, as well as in Tuskegee, Ala., by groups of African Americans and Latinos. The project, “Communities of Color and Genetics Policy,” seeks to develop policy recommendations formed from community voices to manage the use of genetic information and technology in society.
“The project links universities, where the research is being carried out, and the communities, where the research results impact lives,” said Toby Citrin, principal investigator of the project and director of the U-M 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 whose constituents are primarily African Americans or Latinos.
The current project is designed to more fully bring out the values and concerns of groups that traditionally have been under-served and under-heard to complement the results of an earlier project, which involved the general community, according to Citrin. “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.”
The community dialogues will engage citizens in discussions about controversial public policy issues, according to Len Fleck, co-principal investigator and professor of philosophy and medical ethics at Michigan State.
“Participants decide the moral and social values at stake regarding emergent genetic technologies, examine their own values in regards to the issues, and consider the values and opinions of others. The end goal of the dialogue process is to create enough consensus in the group to shape fair and feasible policy recommendations which balance differing values,” Fleck says.
“We have now 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. That means we are much more open to respectful community dialogue that will help us think through these issues more carefully,” says Fleck. “That respectful atmosphere is what needs to be protected in order to maintain the life of these community dialogues. It is what re-invigorates our deepest democratic traditions.”
After a series of five evening dialogues for each of the 12 groups, representatives from each will attend regional community policy meetings to convene with experts in ethics and policy, local legislators and other policy makers to fine-tune the policy recommendations produced by the dialogue 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,” says Citrin.
“The recommendations which result from these dialogues will be very useful to legislators as we grapple with these tough issues,” says Sen. Alma Wheeler Smith. “The community responses will give us insight into the values of our citizens. No special interest group or legislative debate can provide us with such grass-roots insight.”
The participating community-based organizations in Michigan are Bethel AME Church in Ann Arbor; Community Health and Social Services Center and Latino Family Services, Inc. in Detroit; Flint’s Faith Access to Community Economic Development and the Urban League of Flint; Clinica Santa Maria in Grand Rapids; Castillo & Associates Consultants, Inc. in Lansing; Alpha Kappa Alpha Sorority in East Lansing; Omega Psi Phi Fraternity, Inc. in Lansing; and Tri-City S.E.R. Jobs for Progress in Saginaw. Organizations in Tuskegee are not yet designated.
The project began in March and extends through late spring of 2001.
For more information, contact Shelley Coe, community-academic liaison, at (734) 647-8304, e-mail [email protected].

School of Public HealthToby CitrinEthical, Legal and Social Implications BranchAlma Wheeler SmithBethel AME Church[email protected]