The Legacy of the Tuskegee Syphilis Study: Its Impact on Willingness to Participate in Biomedical Studies

Purpose The origins of the phrase ‘legacy of the Tuskegee Syphilis Study (TSS)’ lie in the widely held belief that Blacks are more reluctant than Whites to participate in biomedical research studies because of that infamous study. This paper is the first to address the validity of the ‘legacy’, a key issue in subject recruitment, in a multi-city, multi-racial, large-scale random survey using a detailed questionnaire. Methods The Tuskegee Legacy Project (TLP) Questionnaire, which contains two validated scales, the Likelihood of Participation (LOP) Scale and the Guinea Pig Fear Factor (GPFF) Scale, was administered via random-digit dial telephone interviews to respondents aged 18 years and older in three U.S. cities: Tuskegee, AL; Birmingham, AL; and Hartford, CT. Awareness of the TSS was measured as a yes/no response to two separate questions asking if they had ‘ever heard of the TSS’ while detailed knowledge of the TSS was assessed by a set of seven questions. Results Response rates, by city, ranged from 49–70% and yielded 327 Black and 499 White respondents. Awareness of the Tuskegee Syphilis Study was significantly higher in Blacks than Whites within each city, and ranged from a high of 93.3% for Blacks in Tuskegee, AL, to a low of 41.9% for Whites in Hartford, CT. While adjusted analyses (age, sex, education and income) revealed no association (p <0.05) between either general awareness or detailed knowledge of the Tuskegee Syphilis Study and willingness to participate (LOP Scale) in biomedical research either for Blacks or Whites, Blacks did show an direct association (p=0.02) between awareness and increased GPFF scores, indicating increased wariness. Conclusion As these data show no association between awareness of TSS and willingness to participate (albeit in Blacks, awareness was associated with an increased wariness), the long-held belief about the ‘legacy’ of the Tuskegee Syphilis Study that Blacks would be less willing to participate in biomedical studies is not supported by this study.