The Uses and Abuses of Tuskegee Syphilis Study
The Tuskegee Syphilis Study has come to symbolize the most egregious abuse of authority on the part of medical researchers. The aim of this Tuskegee Syphilis study essay is to reveal the problem of the study and its consequences. Tuskegee has also come to serve as a point of reference for African Americans distrustful of those with power, emblematic of the history of a people enslaved and then subject to social, legal, and political oppression after the end of formal servitude. When Tuskegee as a symbol of research abuse and Tuskegee as an emblem of racial oppression are merged, a potent device is at hand for uncovering profound social injustice. When, however, the legacy of Tuskegee is incautiously invoked--when its legacy is abused--it can serve to make a careful consideration of complex matters involving research with socially vulnerable people all but impossible.
To understand both the uses and abuses of Tuskegee requires that we understand the oft-told--and sometimes mistold—story of what happened between 1932 and 1972. The seminal study by James Jones, Bad Blood, provides the indispensable reference.
As part of its study of the long-term effects of syphilis begun in 1932, the U.S. Public Health Service (PHS) denied treatment to 399 African American men suffering from the tertiary effects of the disease. The PHS launched its 40-year study using a group of patients originally identified in Macon County, Alabama, as part of a demonstration project that recommended mass testing and treatment of syphilis in the South. When money for testing and treatment dried up in the midst of the depression, PHS officers saw an opportunity to prove that syphilis among African Americans was 'almost a different disease from syphilis in the white'.
Researchers and physicians involved in Tuskegee chose not to inform the study's participants that they were infected with syphilis or educate them regarding its treatment or prevention. During the study's recruitment period, PHS officers knowingly provided inadequate treatment for syphilis as a means of securing the support of the state department of health. Although subjects were not told that they had syphilis or were receiving modified treatment for it, the act of offering any kind of treatment helped in luring subjects to the study and gaining their trust. Once the study was under way, scientists deliberately misled the men, telling them that they were receiving treatment for “bad blood”--a generic term that referred to a variety of ailments--rather than syphilis.
Receiving broad cooperation from state and local health officers, local medical practitioners, the military, and the Tuskegee Institute, the PHS successfully thwarted all efforts the men made to receive treatment from other sources. The PHS gave only a placebo to those expecting a full course of treatment. The intent of this study of untreated syphilis--albeit one clearly undermined by the therapy the PHS administered during the enrollment period--was to observe the untreated men until death: 'Everyone is agreed that the proper procedure is the continuance of the observation of the Negro men used in the study with the idea of eventually bringing them to autopsy'. In 1950, one of the study’s originators triumphantly declared, 'We now know, where we could only surmise before, that we have contributed to their ailments and shortened their lives'.
Penicillin dramatically altered the treatment of syphilis. The PHS's Division of Venereal Diseases--the driving force behind the Tuskegee study--began using penicillin in several of its clinics across the nation in the early 1940s. Despite the promise of the new treatment, Tuskegee directors withheld penicillin from its subjects. Not only did the PHS remain committed to seeing the study through to its end, but also used penicillin as a rationale for continuing the study. Never again would the PHS find such a group of untreated individuals.
Even after the study was exposed in 1972, the PHS officials involved with Tuskegee refused to admit wrongdoing. They justified the study on the grounds that they had simply observed a group of men who would not have received treatment anyway and for whom treatment--even penicillin--would not have provided benefit. In any case, argued PHS officers, the men--who believed they were receiving treatment, who were thwarted at each juncture at which they sought outside treatment, and who were threatened with losing free medical care and death benefits if they left the study--had been 'free' to leave the study and receive treatment at any time.
Although Tuskegee was a study that the PHS adapted to changing circumstances, from this account it is possible to derive three critical features that characterize the nature of the consistent research abuses that occurred over the course of forty years. The study involved, first, deceptions regarding the very existence and nature of the inquiry into which individuals were lured. As such, it deprived those seeking care of the right to choose whether or not to serve as research subjects. Second, it entailed an exploitation of social vulnerability to recruit and retain research subjects. Finally, Tuskegee researchers made a willful effort to deprive subjects of access to appropriate and available medical care, which changed over time, as a way of furthering the study's goals.
Thus viewed, Tuskegee touched on issues central to research ethics and can serve as a standard against which to judge contemporary examples of research abuse. But, as a historical event involving the exploitation of African Americans that entailed the examination of a racist thesis, the legacy of Tuskegee and the outrage it has spawned are suffused with race. When the story broke in 1972, there was intense but brief discussion in the medical and public-health press. Some of the problems raised by Tuskegee were, in some limited sense, resolved with the passage of the National Research Act of 1974. The act created institutional review boards (IRBS) and charged them with approving all federally funded human research. But while Tuskegee lay dormant in the popular press for the next decade, it served a critical function in the African American press, becoming a metaphor for genocide.
Within weeks of the first news reports of Tuskegee, the African American press and African American political leaders characterized the forty-year experiment as “outright genocide'. Jet magazine, for instance, created a new news section on 'Genocide.' Along with the rest of the African American press, it began to view a host of issues--the lack of health services; birth control, abortion, and involuntary sterilization; adoption; overexposure to X rays; research among prisoners and infants; prison riots; the U.S. Census--through the lens of Tuskegee. “Tuskegee' crystallized a history of medical neglect and abuse that was a consequence of social and political disempowerment.
It is not surprising, then, that Tuskegee has found potent invocations in the context of the AIDS epidemic, which has so disproportionately affected African Americans. Particularly when falsely remembered, as a tale of how poor African American men were deliberately infected with syphilis, the story of Tuskegee rang true, for it resonated with suspicions of an epidemic manufactured to annihilate a people. James Small, a black studies professor at City College of New York, summed up the views of many when he concluded, 'Our whole relationship to whites has been that of their practicing genocidal conspiratorial behavior on us—from the whole slave encounter to the Tuskegee Study.
In this paper we examine the uses and abuses of Tuskegee in three highly visible AIDS-related debates, which spanned the past decade: the clash over the provision of sterile injection equipment to intravenous drug users, the conflict over unidentified anonymous HIV seroprevalence studies, and the debate over the investigation of interventions to reduce the rate of HIV transmission from pregnant women to their offspring in Third World countries.
