'Legacy' of the Tuskegee Syphilis Study: validation study on impact

Objectives: The need to include minorities in biomedical research studies requires research into obstacles that would block the achievement of this goal, and is critical for formulating inclusive health care and health policy decisions that will address the national focus on reducing health disparities in the U.S.. The purpose of this report from the follow-up 2003 3-City TLP Study was to validate or refute our prior findings from the 1999-2000 4 City TLP Study that found no evidence to support the widely acknowledged ‘legacy of the Tuskegee Syphilis Study' (TSS), i.e., that Blacks are reluctant to participate in biomedical studies due to their knowledge of the TSS.

Methods: The Tuskegee Legacy Project (TLP) Questionnaire was administered in this random-digit dial telephone survey to a stratified random sample of 1,162 Black, White and Puerto Rican Hispanic adults in 3 different U.S. cities: Baltimore, New York City, and San Juan, PR. with response rates by city, of 51%, 44%, and 52%, respectively. The TLP Questionnaire contains two validated scales: the Likelihood of Participation (LOP) Scale and the Guinea Pig Fear Factor (GPFF) Scale.

Results: Adjusting for age, sex, education, income and city, awareness of the TSS was not significantly associated with the LOP Scale (a willingness measure), nor with the GPFF Scale (a wariness measure), either for Blacks, Whites or Puerto Rican Hispanics at p = 0.05..

Conclusions: The findings from this current 3-City TLP Study fail to support the widely acknowledged, ‘legacy' of the Tuskegee Syphilis Study as awareness of the Tuskegee Syphilis Study was not statistically associated with the willingness to participate in biomedical studies, nor with wariness about participation. These findings, in complete agreement with the findings from our 1999-2000 4-City TLP Study, validate those prior findings.

This study was supported by NIDCR/NIH grant U54 DE 14257.