Tuskegee Legacy Project Study Offers Surprising Conclusion:
Inadequate Recruitment and Retention Strategies, Rather Than Unwillingness to Participate, May Explain Low Representation by Minorities in Biomedical Research
The U.S. Public Health Service (USPHS) Syphilis Study at Tuskegee (1932 – 1972), a study of 400 syphilitic African-American male sharecroppers in Macon County, Alabama, who were followed for 40 years so that researchers could observe the effects of untreated syphilis on various organ systems, is arguably the most infamous biomedical research study in U.S. history. Today there is a widespread belief that a major legacy of that study is a strong reluctance among African Americans to participate in clinical research studies for fear of further abuses. But is that true? A new study, The Tuskegee Legacy Project, led by Dr. Ralph V. Katz, Professor and Chair of the Department of Epidemiology & Health Promotion, finds no difference among Blacks, Hispanics and Whites in self-reported willingness to participate in biomedical research, although the two racial/ethnic groups are 1.8 times as likely as Whites to have a higher fear of participation in biomedical research. The study appears in the November 2006 issue of The Journal of Health Care for the Poor and Underserved, published by Johns Hopkins University Press.
According to Dr. Katz, the results present an ethical challenge to researchers, who are mandated by NIH guidelines to include all groups in biomedical research in order to get a true picture of the health of Americans. Efforts to recruit and retain minority participants for ongoing and future biomedical research therefore must become more aggressive, says Dr. Katz. “Essentially what we learned is that the reason Blacks have been underrepresented in research studies is that while they were willing to participate, they were not invited.”