...Though Alzheimer's disease incidence is higher among African Americans — ranging widely from 14% to 100% higher than among whites — much fewer blacks are involved in research studies than whites, says Peggye Dilworth-Anderson, professor of Health Policy & Management at the University of North Carolina-Chapel Hill. "We know there are both genetic and environmental factors at play. We need more research," she says, but researchers can't get there without the study participants.
In the mid-1990s, only 11% of Duke's Alzheimer's study participants were African American, even though the African-American population in Duke's hometown, Durham, N.C., is 38%, Welsh-Bohmer says. As a result of the partnership, that figure now tops 20%, she says. "To really understand Alzheimer's disease, we want our research to be more representative of real life."
Mistrust of the health care system plays a role in why historically fewer blacks than whites get involved in medical research, says Scott Turner, director of the Memory Disorders Program at Georgetown University Medical Center. "The specter of the Tuskegee experiment still lingers," he says, referring to the unethical study conducted more than 40 years starting in 1932. In it, hundreds of African-American male participants were not told they had syphilis and were not given antibiotics.
