Minority Health and Health Equity Archive

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The Tuskegee Syphilis Study, 1932 to 1972: Implications for HIV Education and AIDS Risk Education Programs in the Black Community
(1991) Thomas, Stephen B; Quinn, Sandra Crouse
The Tuskegee study of untreated syphilis in the Negro male is the longest nontherapeutic experiment on human beings in medical history. The strategies used to recruit and retain participants were quite similar to those being advocated for HIV/AIDS preention programs today. Almost 60 years after the study began, there remains a trail of distrust and suspicion that hampers HIV education efforts in Black communities. The AIDS epidemic has exposed the Tuskegee study as a histotical marker for legitimate discontent of Blacks with the public health system. The belief that AIDS is a form of genocide is rooted in a social context in which Black Americans, faced with persistent inequality, believe in conspiracy theories about Whites against Blacks. These theories range from the belief that the government promotes drug abuse in Black communities to the belief that HIV is a manmade weapon of racial warfare. An open and honest discussion of the Tuskegee Syphilis Study can facilitate the process of rebuilding trust between the Black community and public health authorities. This dialogue can contribute to the development of HIV education programs that are scientifically sound, culturally sensitive, and ethnically acceptable.
Tuskegee: From Science to Conspiracy to Metaphor [Editorial]
(1999) Thomas, Stephen B; Curran, James W
On May 16, 1997, in the East Room of the White House, President Bill Clinton issued a formal apology for the Tuskegee Study of Untreated Syphilis in the Negro Male. Directing his words to the survivors, several of whom were over 90 years old, the President said, "...what was done cannot be undone, but we can end the silence. What the United States government did was shameful, and I am sorry." The President placed the burden of responsibility for the abuse on the medical research establishment when he stated, "the people who ran the study at Tuskegee diminished the stature of man by abandoning the most basic ethical precepts. They forgot their pledge to heal and repair."1 Almost 70 years after the study began in 1932, 26 years after it was stopped in 1972, and 1 year after the Presidential apology, there remains a legacy of mistrust among African Americans toward the medical research establishment.2-7 In this issue of The American Journal of the Medical Sciences, Giselle Corbie-Smith's essay argues that this mistrust is legitimate and she illustrates how the long shadow of Tuskegee is a barrier to increasing the participation of African Americans in clinical research. The Presidential apology and the Corbie-Smith essay both demonstrate the danger and the opportunity inherent in any attempt to draw lessons from the Tuskegee Study.
Attitudes and Beliefs of African Americans Toward Participation in Medical Research
(1999) Corble-Smith, Giselle; Thomas, Stephen B; Williams, Mark V; Moody-Ayers, Sandra
OBJECTIVE: To describe barriers to participation of African Americans in research. DESIGN: Focus group interviews conducted in 1997. PATIENTS: Thirty-three African-American adults presenting to an urban public hospital for outpatient medical care participated in one of five focus groups. MEASUREMENTS AND MAIN RESULTS: African-American patients' attitudes toward medical research were measured. Mistrust of doctors, scientists, and the government was reported consistently by the participants. Many participants described concerns about the ethical conduct of clinicians and investigators when poor or minority patients are involved and cited examples of exploitation as supporting evidence for their mistrust of the medical establishment. While participants were clear about the violation of human rights in the Tuskegee Syphilis Study, all were misinformed of the historical facts of the study. Few participants understood the concept of informed consent. Participants saw signing the document as relinquishing their autonomy and as a legal protection for physicians. Despite these concerns, participants gave recommendations to improve minority participation in research. CONCLUSIONS: African-American participants in this study described distrust of the medical community as a prominent barrier to participation in clinical research. Participants described real and perceived examples of exploitation to support their distrust of researchers. The goal of the consent process, to inform patients of risks and benefits so as to facilitate self-determination, was misinterpreted by these participants. Understanding the importance of interpersonal trust within the clinical relationship may prove to be a significant factor in enhancing participation in clinical trials.

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