Communities launch dialogues on genetics policy

ANN ARBOR—Genetic research has created innovative technology and medical advances at a breathtaking pace, but has society adequately dealt with the ethical and policy issues that these advances have created? Is current public policy in tune with the values and perspectives of communities of color?

The Communities of Color and Genetics Policy Project is a collaborative effort of the University of Michigan, Michigan State University, Tuskegee University, and 15 community organizations. It is dedicated to developing genetics public policy that reflects the values and concerns of African-American and Latino communities, according to Toby Citrin, director of community based public health in the U-M School of Public Health, and the project’s principal investigator.

A series of community dialogues with participants from diverse socioeconomic backgrounds are to be followed by meetings with community members and policy-makers to develop genetics policy recommendations that will be shared with policy-makers in state and national government.

Two Ann Arbor community dialogues are under way. Members of the Ann Arbor African American community, recruited by Bethel African Methodist Episcopal Church, are in their fourth week of meetings, while the first dialogue session with members of the Latino community, recruited by La Salud Public Health Student Organization, met for the first time last week.

Participants are discussing issues ranging from access to genetic technology, genetic screening as it relates to the denial of jobs and insurance coverage, and human cloning. Those discussions will be used to develop policy recommendations.

Policy-makers have already expressed interest in the Communities of Color and Genetics Policy Project, Citrin says.

“Universities are carrying out a major portion of the research in genetics. This gives them a responsibility to engage the community in discussions on how that research should be used,” says Citrin. “I am pleased that the National Institutes of Health supports the work of the project, which enables grass-roots community organizations, especially communities of color, to have a voice in genetics policy making”.

Other communities participating include Detroit, Lansing, East Lansing, Grand Rapids and Flint.

Communities of Color and Genetics Policy ProjectBethel African Methodist Episcopal Church