The Tuskegee Legacy Project: history, preliminary scientific findings, and unanticipated societal benefits

Abstract

SummaryThis article is intended to provide a relatively complete picture of how a pilot study-conceived and initiated within an NIDCR-funded RRCMOH-matured into a solid line of investigation within that center and "with legs"into a fully funded study within the next generation of NIDCR centers on this topic of health disparities, the Centers for Research to Reduce Oral Health Disparities. It highlights the natural opportunity that these centers provide for multicenter, cross-disciplinary research and for research career pipelining for college and dental school students; with a focus, in this case, on minority students.Furthermore, this series of events demonstrates the rich potential that these types of research centers have to contribute in ways that far exceed the scientific outcomes that form their core. In this instance, the NMOHRC played a central-and critical, if unanticipated-role in contributing to two events of national significance, namely the presidential apology to the African American community for the research abuses of the USPHS-Tuskegee syphilis study and the establishment of the National Center for Bioethics in Research and Health Care at Tuskegee University. Origins of the Tuskegee Legacy ProjectThe Tuskegee Legacy Project (TLP) has its origins in casual Web surfing by a biomedical reference librarian on her laptop computer on a fall evening in 1993 while relaxing in the dormer room, which served as the family den. Ms. B.J. Frey, Head Reference Librarian at the * Corresponding author. E-mail address: ralph.katz@nyu.edu (R.V. Katz).This research project was supported by NIDCR/NIH grant #P50 DE10592 (University of Medicine and Dentistry of New Jersey/ University of Connecticut Northeastern Minority Oral Health Research Center), and is currently supported in the analysis phase by NIDCR/NIH grant #U54 DE 14257 (NYU Oral Cancer RAAHP Center).Research Centers supported by the NIH are fully intended to create a vortex of scientific activity that goes well beyond the direct scientific aims of the studies initially funded within those centers. The maxim is that the whole should be greater than the sum of its initial constituent studies or parts. We believe that NMOHRC did indeed achieve that maxim-even extending "the whole" to include broad societal impact, well beyond the scope of important, but mere, scientific outcomes-all within the concept and appropriate functions of a scientific NIHfunded research center. NIH Public Access

Awareness of the Tuskegee Syphilis Study and the US Presidential Apology and Their Influence on Minority Participation in Biomedical Research

“…Details on the history and development of the TLP Questionnaire and justifications of the methodological decisions both for the selection of the 4 cities and for the analysis of the TLP Questionnaire have been described elsewhere. 3,30 All TLP Questionnaire interviews were conducted in English. Respondents answered questions but were provided no information about the Tuskegee Syphilis Study during the interview.…”

“…[1][2][3][4][5] This study enrolled 399 Black sharecroppers in Macon County, Ala, and studied the effects of not treating their syphilis. 6,7 There is widespread belief that the "legacy" of this unethical study is that the Black community has a greater reluctance to participate in clinical research studies because of the abuses foisted on the participants in that study.…”

“…No ready explanation for this observation is provided by demographic differences (such as age, gender, education, or income) between our study population and those previous studies. Although the professional literature related to health care in the United States is replete with articles that refer to the impact and assumed legacy of the Tuskegee Syphilis Study, [1][2][3]6,[13][14][15][16][17][18][19][20][21][22][23][24][28][29][30] perhaps the most unusual measure of the depth of cultural influence of this legacy is documented by its recent appearance as the core theme of a Marvel comic book 7-issue series: "Truth: Red, White and Black," written in 2003 as a presequel to the Captain America series. In this fictional presequel series, research abuses abound in experiments done on a Black military unit.…”

Beliefs of Women's Risk as Research Subjects: A Four-City Study Examining Differences by Sex and by Race/Ethnicity

“…Details on the history and development of the TLP questionnaire and justifications of the methodological decisions both for the selection of the four cities and for the analysis of the TLP questionnaire have been published elsewhere. 1,17 This study was approved by the Institutional Review Boards of the University of Connecticut Health Center and of New York University.…”

Awareness and Knowledge of the U.S. Public Health Service Syphilis Study at Tuskegee: Implications for Biomedical Research

“…16,18,21,24 ,-30 Few studies, however, have utilized qualitative or quantitative methods to examine the tripartite relationship between individuals' general awareness of the USPHS Syphilis Study at Tuskegee, their knowledge of specific events of the study, and their willingness to participate in biomedical research. 15,31 The purpose of this review was to collect and interpret the findings of all published qualitative or quantitative research studies that assessed African Americans' attitudes towards and/or willingness to participate in biomedical research, as well as their general awareness and/or specific knowledge of the USPHS Syphilis Study at Tuskegee, To the authors' best knowledge, this is the first review of the literature to be conducted on the effect of awareness and knowledge of the USPHS Syphilis Study at Tuskegee on biomedical research participation.…”