Results of this random survey of 356 African Americans, 493 whites and 313 Puerto Ricans show that 89 percent of respondents across the ethnicities could not name or identify the Tuskegee study.
Even when participants were asked specifically if they had ever heard of the Tuskegee Syphilis Study, only 37.1 percent of blacks, 26.9 percent of whites and 8.6 percent of Puerto Ricans were able to identify the study specifically.
There was no difference between ethnicities in “likelihood of participation” in medical research, the study found, despite the fact that blacks reported being 1.8 times as likely as whites to fear being used as “guinea pigs.”
The Tuskegee Syphilis Study followed 399 black male sharecroppers with syphilis in Macon County, Ala., from 1932-1972. None of the men were treated, even though by 1947 penicillin had become standard treatment for the venereal disease.
Germain Jean-Charles, DDS, chief resident of oral maxillofacial pathology at the University at Buffalo’s School of Dental Medicine and a principal author on the study, says it appears that any fear of research participation is based on distrust of government in general, not on the Tuskegee study in particular.
“The broad goal of the Tuskegee Legacy Project was to address and understand a range of issues related to the recruitment and retention of blacks and other minorities in biomedical research studies,” says Jean-Charles.
“Many decision makers have assumed that because community leaders know about the Tuskegee experiment, their constituencies do as well, and that this knowledge deters minorities from volunteering for research studies. We found that is not the case.”
Ralph V. Katz, DMD, MPH, from the Department of Epidemiology and Health Promotion at NYU College of Dentistry, is first author on the current study, which appeared in a recent issue of BMC Public Health.
The study was funded by the National Institute of Dental and Craniofacial Research (NIDCR) at the National Institutes of Health (NIH).
The researchers were responding to the NIH mandate for research on factors that have contributed to current health disparities, and on ways to include blacks and other minority groups in health research to make sure findings apply to all U.S. residents.
Earlier studies on willingness of blacks to take part in medical research were conducted in a single city, only reported findings from subsamples of participants, used only a single question on willingness to participate, or focused specifically on cancer research. The Tuskegee Legacy Project developed the questionnaire to provide findings that could be generalized to the public at large.
The questionnaire initially was administered in 1999-2000 to persons in Birmingham and Tuskegee, Ala., Hartford, Conn., and San Antonio, Tex. The current survey, carried out in Baltimore, Md., New York City, and San Juan, PR. is a follow-up to that study.
Analysis of the survey shows that more individuals had a vague impression of hearing of a medical event that would influence their trust in medical research than could name a specific event, the authors note. Only 7.3 percent were able to name the Tuskegee event.
“Community leaders think their constituencies know about the Tuskegee Syphilis Study, but this survey proves they don’t,” says Jean-Charles. “I think information about Tuskegee was not disseminated broadly. Many of those closest geographically probably knew about it, but the further away you get from the Deep South, the less people seem to know.”
Jean-Charles says the researchers plan to analyze many of the remaining key items in the survey to better understand the public perception of the Tuskegee study.
Additional authors on the study are B. Lee Green, from H. Lee Moffitt Cancer Center & Research Institute; Nancy R. Kressin, Boston University School of Medicine; Cristina Claudio, University of Puerto Rico School of Dentistry; MinQi Wang, University of Maryland School of Public Health and Stephanie L. Russell and Jason Outlaw from NYU.
The University at Buffalo is a premier research-intensive public university, a flagship institution in the State University of New York system and its largest and most comprehensive campus. UB’s more than 28,000 students pursue their academic interests through more than 300 undergraduate, graduate and professional degree programs. Founded in 1846, the University at Buffalo is a member of the Association of American Universities.