Twenty years after. The legacy of the Tuskegee Syphilis Study. The dangers of difference.
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The Tuskegee Study of Untreated Syphilis (TSUS) is the subject of medical research, healthcare, ethics, race relations and fictitious media portrayals (e.g., movie, play). Unraveling misrepresentations about the TSUS is important because prevailing views continue to contribute to alleged mistrust of the medical system by the black community and compromised doctor-patient and researcher-participant relationships. A comparative analysis of standard TSUS information was conducted and included evidenced-based alternative information in an effort to: (a) contextualize the TSUS with accurate medical, public health and historical information and (b) balance claims of racism, nontreatment and denial of treatment. An article in the Winter 2003 Radcliffe Quarterly misrepresented the images of two historical African-American health institutions, the John A. Andrew Memorial Hospital and the Tuskegee Veterans Administration Hospital. A critical analysis challenges these pictorial misrepresentations and documents, in part, a continuing and prevailing pattern of biased misrepresentations in discussions about the TSUS. The National Medical Association (NMA) and the Journal of the National Medical Association have a history of advocacy for African-American health, a record of combating racial discrimination and a quest for truth about the status of the black community. As past NMA historical notables have performed through their advancement, service and leadership, health professionals now have the opportunity, obligation and information to educate the American community about the TSUS with evidenced-based information.
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The Tuskegee Syphilis Study continues to cast its long shadow on the contemporary relationship between African Americans and the biomedical community. Numerous reports have argued that the Tuskegee Syphilis Study is the most important reason why many African Americans distrust the institutions of medicine and public health. Such an interpretation neglects a critical historical point: the mistrust predated public revelations about the Tuskegee study. This paper places the syphilis study within a broader historical and social context to demonstrate that several factors have influenced--and continue to influence--African American's attitudes toward the biomedical community.
PURPOSE: The participation of minorities in clinical studies is the subject of much discussion and has even become the subject of Federal law. The project known as the Tuskegee Syphilis Study and officially titled "The Tuskegee Study of Untreated Syphilis in the Negro Male," is one of the great debacles of American medicine and a national shame. Despite the fact that its existence is well known, many do not know the historical facts of the study nor the context of the study. My purpose here is to recount the facts of the study and its historical context. METHODS: The history recounted here is taken from documents gathered during a U.S. Senate investigation of the study, original papers located in National Library of Medicine, and books about the trial. RESULTS: The trial began in 1931 as a survey of the natural history of untreated tertiary syphilis in Black men. This study enrolled 399 men with syphilis and 201 uninfected men to serve as controls. All were at least 25 years old at enrollment. The men were told they were in a study, but never educated about the implications. Later, men were not informed that there was a treatment for effective treatment for their disease--a treatment that was being withheld from them. This trial continued till 1972. CONCLUSION: Many of the issues that led to the study and caused it to continue for 40 years still exist. The lessons of the Public Health Study of Untreated Syphilis in the Untreated Negro include the dangers of paternalism, arrogance, blind loyalty, and misuse of science. "Those who do not appreciate history are condemned to repeat it" (Alfred North Whitehead).
African Americans are less likely than European Americans to participate in biomedical research. Researchers often attribute nonparticipation to the "Tuskegee effect." Using critical qualitative analysis of focus group data, we examined the public's use of the Tuskegee Study of Untreated Syphilis (TSUS) to discuss biomedical research. Our participants articulated three primary themes in relation to TSUS: 1) that TSUS made them suspicious about biomedical research; 2) that other values had to weigh against concerns about TSUS; and 3) that African Americans could take steps to resolve their concerns about TSUS. African Americans were more likely to discuss TSUS than were European Americans. African Americans did not use TSUS to express simple fear. African Americans suggested issues other than TSUS that influence the decision to participate in research. African Americans indicated specific reforms that would increase participation in research. We discuss how a better understanding of African Americans' use of TSUS can enhance research participation and allay concerns about "another Tuskegee."
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The medical profession will face many challenges in the new millennium. As medicine looks forward to advances in molecular genetics and the prospect of unprecedented understanding of the causes and cures of human disease, clinicians, scientists and bioethicists may benefit from reflection upon the origins of the medical ethos and its relevance to postmodern medicine. Past distortions of the medical ethos, such as Nazism and the Tuskegee Syphilis Study, as well as more recent experience with the ethical challenges of employer-based market driven managed care, provide important lessons as medicine contemplates the future. Racial and ethnic disparities in health status and access to care serve as a reminders that the racial doctrines that fostered the horrors of the Holocaust and the Tuskegee Syphilis Study have not been completely removed from contemporary thinking. Inequalities in health status based on race and ethnicity, as well as socioeconomic status, attest to the inescapable reality of racism in America. When viewed against a background of historical distortions and disregard for the traditional tenets of the medical ethos, persistent racial and ethnic disparities and health and the prospect of genetic engineering raise the specter of discrimination because of genotype, a postmodern version of "racist medicine" or of a "new eugenics." There is a need to balance medicine's devotion to the wellbeing of the patient and the primacy of the patient-physician relationship against with the need to meet the health care needs of society. The challenge facing the medical profession in the new millennium is to establish an equilibrium between the responsibility to assure quality health care for the individual patient while affecting societal changes to achieve "health for all."
The medical profession will face many challenges in the new millenium. As medicine looks forward to advances in molecular genetics and the prospect of unprecedented understanding of the causes and cures of human disease, clinicians, scientists, and bioethicists may benefit from reflection on the origins of the medical ethos and its relevance to postmodern medicine. Past distortions of the medical ethos, such as Nazism and the Tuskegee Syphilis Study, as well as more recent experience with the ethical challenges of employer-based, market-driven managed care, provide important lessons as medicine contemplates the future. Racial and ethnic disparities in health status and access to care serve as reminders that the racial doctrines that fostered the horrors of the Holocaust and the Tuskegee Syphilis Study have not been removed completely from contemporary thinking. Inequalities in health status based on race and ethnicity, as well as socioeconomic status, attest to the inescapable reality of racism in America. When viewed against a background of historical distortions and disregard for the traditional tenets of the medical ethos, persistent racial and ethnic disparities in health and the prospect of genetic engineering raise the specter of discrimination because of genotype, a postmodern version of "racist medicine" or of a "new eugenics." There is a need to balance medicine's devotion to the well-being of the patient and the primacy of the patient-physician relationship against the need to meet the health care needs of society. The challenge facing the medical profession in the new millennium is to establish an equilibrium between the responsibility to ensure quality health care for the individual patient while effecting societal changes to achieve "health for all."
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The Tuskegee Study of Untreated Syphilis (TSUS) is an important issue in research, healthcare, ethics and race relations. The assumed consequences of knowledge of this study on the African-American community include mistrust of the healthcare system. In the July 2005 issue of the Journal of the National Medical Association, Brandon, Isaac and LaVeist (the authors), who were at the Center for Health Disparities Solutions, Johns Hopkins Bloomberg School of Public Health, reported the results of black-white differences in awareness of and knowledge about the TSUS and the effect of that awareness and knowledge on medical mistrust. The study surveyed blacks, whites and others in the Baltimore, MD community about their knowledge of and attitudes about the TSUS. The respondents who were aware of the TSUS were asked survey items to assess specific factual information about the TSUS. The respondents who were not aware of the TSUS were read a brief description of the TSUS taken from the CDC website. Both groups were asked if a similar study was possible today. The authors performed a regression analysis of mistrust of medical care based on race, knowledge of the TSUS and demographic variables. The editorial identified and explained challenges in the article, i.e., challenges in calculations, demographic analysis by race, knowledge of TSUS, cultural sensitivity and methodology. The authors miscalculated the "similar proportions" of blacks and whites who were aware of the TSUS; the recalculated proportions, favoring whites, were different than reported by others. There was no demographic analysis by race in their article--also different than other published reports. Most respondents--blacks and whites--who were aware of the TSUS at baseline answered incorrectly the author-selected questions about the TSUS, particularly the fact-based question of whether the TSUS researchers gave syphilis to the men-not dissimilar to one other report. The source for TSUS information (the CDC website) that was used to educate respondents who were not aware of the TSUS at baseline had contradictions, errors and challenges in black history, medical and public health history, and women's studies. The content of what was actually read to respondents was unknown. Proportionally more whites who were not aware of the TSUS but who were read author-selected information about the TSUS believed that a similar study could happen today-a belief and possibly mistrust of medical care that appeared to be induced-compared to whites with prestudy awareness of the TSUS but not read information from the CDC website. Both black groups were not dissimilar from each other. The authors used a survey that measured a race difference in response to a medical event (TSUS) specific to only one racial group (blacks) when there were inclusive examples specific to other groups available. The authors used "Tuskegee" as a single-word sound bite for the TSUS--a misuse that was inappropriate in scientific and research discourse and that may fuel mistrust of medical care. Whether knowledge of the TSUS was a predictor of mistrust of the healthcare system was inconclusive based on the results in the authors' article. The core findings of the article made believing their case difficult. The editorial suggested that bias and misinformation in undertaking, analysis and reporting the study may in itself fuel mistrust in medical care in the community. Because of these challenges, the editorial urged caution with regard to any change in research direction or policy debate based on the results reported in the article.
The author provides a historical context for the difficult ethical and clinical issues associated with the inclusion of women and members of minority groups in clinical research. He cites as a point of departure the Nuremberg Code of the late 1940s, which declared the fundamental dignity of human beings involved as research subjects, a principle that was quickly endorsed worldwide. From the period following World War II through the 1970s, the prevailing attitude--not always practiced--toward research subjects in the United States was that they should be protected from exploitation. That attitude was reflected in the first broad federal policy on research subjects, created in 1966. During those years, research was widely regarded by the public as dangerous and of little value to individual participants; it is remarkable that so many men and women consented to participate in clinical studies at that time. Furthermore, during the 1970s, for reasons explained by the author, various events--the abortion debate, disclosures from the infamous Tuskegee syphilis study, Nixon's "war on cancer," new federal regulations in 1974 and 1975 (the latter providing additional protection for pregnant women in research), the broad interpretation of the FDA's 1977 policy excluding pregnant or potentially pregnant women from clinical trials, and the tendency of blacks and persons from other minority groups to shun participation in research--tended to deter participation of women and members of minority groups in clinical research.(ABSTRACT TRUNCATED AT 250 WORDS)
This paper discusses the use of the Milgram obedience experiments and the Tuskegee syphilis study in the bioethical literature. The two studies are presented and a variety of uses of them identified and discussed. It is argued that the use of these studies as paradigms of problematic research relies on a reduction of their complexity. What is discussed is thus often constructions of these studies that are closer to hypothetical examples than to the real studies.