Perceptions of the USPHS Syphilis Study at Tuskegee and willingness to participate in biomedical research: A review of the literature

APHA Scientific Session and Event Listing

Jan McCallum, BS¹, Dhananjaya Arekere, PhD², Lee Green, PhD², Ralph Katz, DMD, MPH, PhD³, and Brian Rivers, PhD². (1) Texas A&M Univeristy, Center for the Study of Health Disparities, 4222 TAMU, 112 Harrington Tower, College Station, TX 77843, 979-845-3502, jmmccallum@hlkn.tamu.edu, (2) Center for the Study of Health Disparities, Texas A&M Univeristy, 4222 TAMU, 112 Harrington Tower, College Station, TX 77845, (3) Department of Epidemiology and Health Promotion, NYU College of Dentistry, MC-9416, 345 E. 24th St., New York, NY 10010

Objectives: The purpose of this review was to collate and interpret the findings of all published qualitative or quantitative research studies that assessed 1) general awareness and/or specific knowledge of the US Public Health Service (USPHS) Syphilis Study at Tuskegee, and 2) attitudes towards and/or willingness to participate in biomedical research.

Methods: To identify eligible articles, the authors searched Cambridge Scientific Abstracts Database using the keywords: “Tuskegee Syphilis Study” or “Tuskegee”, “Minority” and “Willingness to participate”, and “US Public Health Service Syphilis Study”. The authors also searched Google Scholar and the bibliographies of retrieved articles to identify additional studies. An exhaustive review of the literature yielded nine articles that fit the specified inclusion criteria. Four studies utilized a focus group design, while five studies used a cross-sectional survey design.

Results: All articles that assessed both awareness and knowledge found that familiarity with the USPHS Syphilis Study at Tuskegee did not necessarily correlate with accurate knowledge of the study's events. Several, but not all, studies also found that awareness of the USPHS Syphilis Study at Tuskegee was not related to willingness to participate in biomedical research.

Conclusion: Minorities' mistrust and unwillingness to participate in biomedical research may be influenced by multiple factors including, but not limited to, awareness and knowledge of the USPHS Syphilis Study at Tuskegee. Published studies indicate a broad array of sociocultural factors influence minorities' willingness to participate in biomedical research. Future research should explicate the interactive impact of all these factors on participation rates.

Learning Objectives:

At the conclusion of the session, the participant in this session will be able to

1. Recognize the lack of empirical evidence linking the US Public Health Service Syphilis Study at Tuskegee to low participation in biomedical research among minorities.
2. Describe how general awareness of the US Public Health Service Syphilis Study at Tuskegee does not necessarily equate to accurate knowledge of the study’s events.
3. Identify key findings from the nine articles reviewed in this paper.
4. Discuss the role of ecological level factors that also contribute to minorities’ willingness to participate in biomedical research.

Keywords: Minority Health, Research Ethics

Presenting author's disclosure statement:

Not Answered

APHA Student Assembly Late Breaker Poster Session

The 134th Annual Meeting & Exposition (November 4-8, 2006) of APHA