Cultural Memory and the Tuskegee Syphilis Study: The Tuskegee Syphilis Study Is Surrounded by Illuminating Misconceptions-Myths That Cannot Be Blithely Dismissed Because They Actually Provide Some Insight into the Significance of the Study
Reverby, Susan M., The Hastings Center Report
Cultural memory and the Tuskegee syphilis study: the Tuskegee Syphilis study is surrounded by illuminating misconceptions--myths that cannot be blithely dismissed because they actually provide some insight into the significance of the study. One of those is that the men were deliberately infected with syphilis; another is that they obtained no treatment for the disease. Some other errors are alleged in two recent articles about the study, but these articles themselves create their own fictions. (More than Fact and Fiction)
Despite its long history as a crucial site in the fight for racial justice in America, Tuskegee, Alabama, will be forever linked in America's collective memory to the Tuskegee Syphilis Study. (1) In the counties surrounding this small southern community, the U.S. Public Health Service ran a forty-year study, from 1932 until 1972, of "untreated syphilis in the male Negro," while telling the men in the study that they were being "treated" for their "bad blood." The outcry over the study, which affected approximately 399 African-American men with the disease and 201 controls, led to a lawsuit, Senate hearings, a federal investigation, and new rules about informed consent. It provided a powerful metaphor for racism, ethical mistakes, and the danger of state-run medical research. It has also generated rumors, historical monographs, videos, documentaries, plays, poems, music, a movie, photo-montages, a surgeon general's nomination hearings, a presidential apology, a common topic for IRB training, new memorials, and a National Bioethics Institute. (2)
The Tuskegee study is therefore an experience for which there is no longer a straightforward historical narrative, and moreover it cannot offer a simple morality tale. Rather, it exists in the liminal area of historical fog and fact, available as a set of experiences to be used by those who wish to tell differing tales, make various political points, and remember in discordant ways. (3) As with other stories of critical importance in our national heritage, and especially those that focus on race and sexuality, the study endures on the cusp of memory and fact and in imagination, nightmare, and historical accounting at the same moment.
Understanding the study's current import requires an assaying of these beliefs and memories, exploring how and where they travel, the experiences they build upon, and the truths they proclaim. (4) Fact and fiction have long circulated about the study, and the misreadings have at times served important cultural functions. More recently, two new articles appearing in medical-related journals question the current historical orthodoxy on the study by focusing primarily on the medical facts of treatment protocols for late latent syphillis. I will argue, however, that a different kind of fiction is created when the "facts" of medical uncertainty, even when historicized, are separated from. a nuanced analysis of the interactions between race and medicine.
The "Fact" of Deliberate Infection
The source of the men's syphilis is often a disputed "fact." The high rate of infection in the counties near Tuskegee made the area of interest to the PHS, (5) and the PHS located the men who became the study's unwitting subjects after they tested positive for the disease (using the Wassermann test), gave a clinical history of the infection, and were diagnosed as being in the disease's latency stages. (6) This is made clear in all the major historical works on the study. (7)
The belief persists, however, that the PHS actually gave the men syphilis. This story has appeared on an NBC evening broadcast, an Eddie Murphy cartoon series, a scholarly scientific paper, talk radio call-in shows, and in community rumors. The "error" has been corrected many times over, but apparently to limited effect. It is even sometimes believed that the World War II Tuskegee airmen were the ones targeted, perhaps because the first military training of African American pilots was frequently referred to as "the Tuskegee experiment. …