Policy is often made based on historical understandings of particular events, and the story of the "Tuskegee" study has, arguably more than any other medical research experiment, shaped policy surrounding human subjects. The forty-year study of "untreated syphilis in the male Negro" sparked outrage in 1972 after it became widely known, and it inspired the political push for requirements for informed consent, the protection of vulnerable subjects, and oversight by institutional review boards.
When the story of this study circulates, however, it often becomes mythical. In truth, the United States Public Health Service (PHS) doctors who ran the study observed the course of the already acquired and untreated late latent disease in hundreds of African American men in Macon County, Alabama. They provided a little treatment in the first few months in 1932 and then neither extensive heavy-metals treatment nor penicillin after it proved a cure for many with the late latent stage of the disease. Yet much folklore asserts that the doctors went beyond this neglect, and that they secretly infected the men by injecting them with the bacteria that cause syphilis. This virally spread belief about the PHS's intentional infecting appears almost daily in books, articles, talks, letters, Web sites, tweets, news broadcasts, political rhetoric, and above all in whispers and conversations. It is reinforced when photographs of the study's blood draws circulate, especially when they are cropped to show prominently a black arm and a white hand on a syringe that could, to an unknowing eye, be seen as an injection.
Historians of the study have spent decades now trying to correct the misunderstandings in the public and the academy, and to make the facts as knowable as possible. The story is horrific enough, it is argued, without perpetuating misunderstanding over what really did happen and how many knew about it. What if, however, the PHS did conduct a somewhat secret study whose subjects were infected with syphilis by one of the PHS doctors who also worked in "Tuskegee?" How should this be acknowledged and affect how we discuss historical understandings that drive the need for human subject protection?
Rumors and Realities
Scholars who wish to debunk the myth of deliberate infection in the study in Tuskegee can acknowledge that myths do express some basic realities. As the oral historian Alessandro Portelli argues, "The wrong tales allow us to recognize the interests of the tellers and the dreams and desires beneath them." "A rumor," other folklorists suggest, "is a 'form of communication through which men [and women] caught together in an ambiguous situation attempt to construct a meaningful interpretation of it by pooling their intellectual resources.'" In a highly racialized and racist country, the idea that government scientists—drunk on their power over trusting sharecroppers in need of care—would deliberately and secretly infect black men with a debilitating and sometimes deadly disease seems possible.
Yet those scholars may also argue that people who believe in such deliberate infection are confusing the study with other American 1960s and 1970s horror tales about overzealous medical researchers who injected cancer cells into elderly Jewish patients and provided live hepatitis cells through feeding or injections to young children with mental retardation. The conflating also comes when the study is referred to as "America's Nuremberg" (to equate its effect on ethics) and to link it to the horrors of the monstrous Nazi medical experiments. In addition, to think the men were infected taps deep into our cultural collective consciences' fears of experimentation. It avoids considering the study's unwitting participants' sexual activities, or those of their parents, since syphilis is primarily, of course, a sexually transmitted disease. To assume the men in the study were infected, rather than watched for decades, appears to make the racism worse, although it is the very ordinariness of the withholding of treatment that ought to frighten us more.
Historians and other scholars have also argued that there were debates over whether the heavy-metals treatments were appropriate for those in the late latent stage of the disease and that public health's mission was to stop contagion, not focus on chronic illness. Others have claimed, too, that the concern with...