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The Tuskegee Study, an observational study of over 400 sharecroppers with untreated syphilis, was conducted by the U.S. Public Health Service to document the course of the disease in blacks, and racial differences in the clinical manifestations of syphilis. The men were not told they had syphilis, not given counseling on avoiding spread of the disease, and not given treatment throughout the course of the study. The study became the longest (1932-1972) nontherapeutic experiment on humans in the history of medicine, and has come to represent not only the exploitation of blacks in medical history, but the potential for exploitation of any population that may be vulnerable because of race, ethnicity, gender, disability, age or social class. It is important for physicians who will be caring for an increasingly diverse nation to understand the lasting implications of this study for their patients, but the effects of the Tuskegee Syphilis Study are demonstrated most strikingly by unsuccessful attempts at improving representation of minority patients in clinical trials.
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 prevention 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 historical marker for the 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.
The ethical problems that surrounded the Tuskegee Syphilis Study prompted widespread public criticism when they first surfaced in 1972; the Tuskegee Study remains an important case in bioethics. We recently examined public health student knowledge of the ethical significance of the Tuskegee Study as part of an ethics curriculum needs assessment at Tulane University. A brief questionnaire was administered to 236 graduate students currently enrolled in seven epidemiology courses. Basic demographic information was obtained along with information about degree program. A series of questions was then asked to assess student knowledge of bioethics including the ethical significance of the Tuskegee Study. Only 19% (46 of 236) of the students demonstrated knowledge of the ethical significance of the Tuskegee Study. Knowledge of the Tuskegee Study's ethical significance was higher among students who were from the United States and those who were enrolled in the epidemiology program (P < .05). The ethical problems that surrounded the Tuskegee Study have rarely been encountered in public health. However, this important case stands as an exemplar of the potential for ethical abuses in human subjects research. Such cases ought to be highlighted in public health curricula. Medical Subject Headings (MeSH): blacks, African Americans, educational curriculum, epidemiology, ethics, public health, racism.
In May 1997, President Bill Clinton apologized for the Tuskegee Syphilis Study. The President's action underscores that in the 25 years since its public revelation, the study has moved from a singular historical event to a powerful metaphor that symbolizes racism in medicine, misconduct in human research, the arrogance of physicians, and government abuse of black people. The Tuskegee Syphilis Study also has implications for women's health. Discussion of the study usually ignores its impact on the wives of the victims. In addition, African-American women may be more reluctant to participate in clinical trials because of the shadow cast by the syphilis study and other incidents of medical abuse. Finally, the Tuskegee Syphilis Study reminds us that the battle against racism must be an integral part of the campaign to improve women's health.
The participation of African Americans in clinical and public health research is essential. However, for a multitude of reasons, participation is low in many research studies. This article reviews the literature that substantiates barriers to participation and the legacy of past abuses of human subjects through research. The article then reports the results of seven focus groups with 60 African Americans in Los Angeles, Chicago, Washington, DC, and Atlanta during the winter of 1997. In order to improve recruitment and retention in research, the focus group study examined knowledge of and attitudes toward medical research, knowledge of the Tuskegee Syphilis Study, and reactions to the Home Box Office production, Miss Evers' Boys, a fictionalized version of the Tuskegee Study, that premiered in February, 1997. The study found that accurate knowledge about research was limited; lack of understanding and trust of informed consent procedures was problematic; and distrust of researchers posed a substantial barrier to recruitment. Additionally, the study found that, in general, participants believed that research was important, but they clearly distinguished between types of research they would be willing to consider participating in and their motivations for doing so.
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