TUSKEGEE—Three years after President Bill Clinton formally apologized for the U.S. government’s orchestration of the infamous Tuskegee Syphilis Study, the National Advisory Board and the Community Advisory Board of the Communities of Color and Genetics Policy Project will meet at Tuskegee University on May 16-17.

From 1932 to 1972, 399 poor Black sharecroppers in Macon County, Ala., were denied treatment for syphilis and deceived by physicians of the U.S. Public Health Service, according to the 1996 Syphilis Study Legacy Committee report. As part of the Tuskegee Syphilis Study, designed to document the natural history of the disease, these men were told that they were being treated for “bad blood.”

In fact, said the report, government officials went to extreme lengths to ensure that the men received no therapy from any source. In doing so, the physicians endangered not only the health of these men, but also the health of their families as well.

In his remarks, President Clinton recognized that a formal apology was only the first step in the healing of the wounds left by the Tuskegee study. He urged that action be taken in order to ensure that such a tragedy will never happen again. As a result, the Tuskegee University National Center for Bioethics in Research and Health Care was established.

The Communities of Color and Genetics Policy Project is a collaborative effort joining the resources of the University of Michigan, Michigan State University, Tuskegee University and 15 Latino and African American community-based organizations in Michigan and Alabama, and is responsive to President Clinton’s call for action, according to Toby Citrin, principal investigator of the project. He is director of community-based public health at the U-M School of Public Health and an adjunct professor of health management and policy.

“Universities are carrying out a major portion of the research in genetics,” Citrin says. “This gives them a responsibility to inform and engage the community in shaping policies which determine how that research will be used. 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.”

Community dialogue sessions have provided a forum for minorities to express their opinions and perspectives on issues pertaining to genetics, says Citrin. The privacy of an individual’s genetic information, genetics as it relates to job discrimination and insurance eligibility, research on employees, and the role of humans as test subjects are just a sample of the issues being discussed and debated within these forums.

During the meeting in Tuskegee, board members will discuss how best to facilitate an interaction between minority dialogue participants and policy-makers on the state and national levels.

“The policy implications resulting from genetics research are profound,” says Yvonne Lewis, program developer at Faith Access to Community Development in Flint and a member of the project’s Community Advisory Board. “Our goal is to ensure as much as we absolutely can that the residents of our community are not only aware of this research but also have some input about its results.”

Goal of the project is to give minority communities a voice in the genetics public policy debate. Marian Grey Secundy, the project’s co-principal investigator and director of the Tuskegee University National Center for Bioethics in Research and Health Care, says, “This work that we’re doing is putting into reality a commitment to transform and reverse the negative legacy of the Tuskegee study by involving community members in shaping public policy around research.

“The hope is that we can demonstrate that if communities of color are informed and vigilant, they can enjoy the benefits of scientific research and overcome the suspicion and distrust that has been generated by historical violations such as the U.S. Public Health Service syphilis study.”

National Advisory Board1996 Syphilis Study Legacy Committee reportNational Center for Bioethics in Research and Health CareToby CitrinNational Institutes of HealthFaith Access to Community Development