Awareness of the Tuskegee syphilis study: impact on offenders' decisions to decline research participation

Ethnic and racial minorities are often under-represented in research. There is considerable speculation that Blacks, in particular, are discouraged from research participation because of researcher improprieties in the U.S. Public Health Service (USPHS) Syphilis Study at Tuskegee (aka the Tuskegee Syphilis Study TSS]), a 40-year (1932–1972) study in which investigators withheld medical treatment from African-American men infected with syphilis. We debriefed 281 offenders who declined participation in a research study to assess the extent to which knowledge of the TSS impacted their decisions not to enroll. Relatively few (44/281; 15.6%) reported awareness of the TSS. Half (n = 22) of these “aware” individuals could cite factually accurate information about the TSS, and only four individuals indicated that awareness of TSS had “somewhat” influenced their decision to not participate. Findings suggest that the legacy of the TSS played a relatively minor role in these offenders' decisions to decline research participation. Copyright © 2011 John Wiley & Sons, Ltd.