In 1932, doctors from the U.S. Public Health Service began a study on untreated late-stage syphilis. The doctors were all white men; the study's subjects were all black men, as the doctors believed that the afflicted person's race would have an impact on the progression of the disease. The study included some 400 men who were presumed to have late-stage syphilis, as well as about 200 controls presumed to be free of the disease. Those men who did have syphilis were told that they were being treated -- though in truth they received little or no treatment -- and were not told that they were part of a study.
The Tuskegee study continued for 40 years -- long after the discovery of penicillin, which might have helped some of the subjects. Finally, in 1972, an Associated Press story and resultant public outcry brought the study to a close. In the years since then, as Susan M. Reverby writes, Tuskegee has come to be known as "a straightforward allegory for all time about racism, medicine, and mistrust." In her new book Examining Tuskegee: The Infamous Syphilis Study and its Legacy (University of North Carolina Press), Reverby explains how the study came about and why it went on for so long; the book also tells the stories of the people involved, both doctors and subjects, and discusses how the study has been used in cultural and political rhetoric.
Reverby, who is Marion Butler McLean Professor in the History of Ideas and professor of women's studies at Wellesley College, responded via e-mail to questions about her book.
Q: What inspired you to write a book about the Tuskegee study now, when so many books about it (including Tuskegee’s Truths, a volume you edited) already exist?
A: At first I thought there was enough, too. I was going to write primarily about the motives and experiences of Eunice Rivers Laurie, the African American public health nurse who served as the go-between the men in the study and the doctors, and as the key character in the fictional play/film “Miss Evers’ Boys.” After I wrote one article on her, however, I realized there was not enough material to write an entire historical book, nor did I think it was right to have her carry the burden of the story. As I did the edited book instead and steeped myself in the materials, I realized “Tuskegee” has become the late 20th-21st century symbol for racism and the failure to treat African Americans as rights-bearing citizens. I became hooked both by the power of the story and the ways it was told. I realized there needed to be a book about what had happened that reflected new analysis and then how the Study is remembered and used politically.
Q: In the book's introduction you write that "the stories of what happened during the study have taken on ever-changing and mythic proportions." What are some of the most persistent myths about the Tuskegee study, and how have they informed its legacy?
A: The most persistent and ever-present myth is that the U.S. Public Health Service (PHS) doctors injected or infected the men of the study with the bacteria that causes syphilis; there is absolutely no evidence that this happened. In fact, syphilis is a very difficult disease to pass on except through sexual contact; through a mother in the infectious stage to her fetus/infant; or through wet nursing. Rather the PHS followed the men for 40 years (1932-72) and deceived them into thinking they had treatment with aspirins, tonics, and diagnostic spinal taps. This is bad enough.
If, however, we understand that the men were watched, not treated for their late state syphilis, then I think the racism is actually worse. The doctors become much more normative as they make decisions on who can get treatment and who cannot. The unwitting participants in the study become Americans who needed health care and thought they were getting it. And if you consider that the men could have still been contagious and passed the disease on to their wives or other sexual partners, then the concept of “infecting” takes on a different kind of meaning.
Q: You’ve been researching and writing about Tuskegee for over 15 years. How has your perception of its facts and implications changed over that time -- and how has public perception of the study changed?
A: I began by believing none of the men ever found a way to treatment; that the PHS chased them down all over the country to prevent treatment and had caused most of their deaths. My perceptions changed when I read the actual articles and correspondence between the doctors about the study, examined the debates over treatment for syphilis at its various stages, interviewed people in Tuskegee and doctors from the PHS, and then analyzed the men’s medical records that were opened to the public in the National Archives in Morrow, Georgia because of a FOIA filed by historian/librarian Twanna Whorley. This forced me to rethink what I knew and why I knew it. I had to then consider where the “facts” came from and how they could be read or misread.
I am struck by how more mythical the study seems to be over time and therefore how it has become increasingly powerful as its facts are stripped away or misremembered. I can see how it gets used to explain a series of ills from health disparities to horrible living conditions. It reappears whenever we are having any mention of medical care or government control: from the origins of the HIV/AIDS to referendums on government funded stem cell research to debates on participation in clinical trials and now to the concern with H1N1 (swine flu) vaccine.
Q: At the end of the book, you write of your hope that eventually we will “no longer need” the lens of the study “to interpret injustice” – implying, of course, that at least for now, there still exists ample injustice to bolster the study’s ongoing cultural relevance. What recent events have raised the spectre of Tuskegee?
A: The most recent event is demonstrated on Twitter, where I read this supposed warning: "Don’t take the swine flu vaccine. Remember the Tuskegee Experiment Syphilis Vaccine." Similarly, the study was referenced in a Los Angeles Times story to explain the low rates of African Americans trying to get the H1N1 (swine flu) vaccine. Most often, knowledge of the study is called upon, usually without evidence, to explain fears of clinical trials. The study can be used in non-medical settings as well. Spike Lee, for example, argued that it was possible to believe that the government intentionally let the levees fail in New Orleans because those who could do the syphilis study could do this as well.
Most of the research that actually looks at the effect of knowledge of the study suggests, however, that it does not explain health disparities or distrust. As Loretta Jones, head of the Los Angeles organization Healthy African American Families, recently told a reporter: “It’s more than the legacy of Tuskegee -- it’s a whole lifetime of poor access to health care.” I would add that "Tuskegee" becomes a word to explain racism, mistrust, fear and the day-to-day experiences, not some distant past. It is not the study’s facts alone that become important, but what it has come to mean.
Q: Between the H1N1 pandemic and the Obama administration’s efforts to reform health care, the government’s involvement in medical care is a particularly salient topic right now. What lessons from Tuskegee remain relevant to such discussions, and how so?
A: The study is usually invoked to explain mistrust. I would argue that it should be called upon to help explain what happens to people who do not have access to health care. In the face of the health care reform debates, "Tuskegee" can offer another perhaps less obvious, if ironic, lesson. The study’s men living in rural Alabama came forward for what they were told was "treatment" not because they were uneducated and easily duped by their government, but because they needed health care for themselves and their families. The private medicine in the county did not take care of their needs. They, as with increasing numbers of Americans now, had no real access to the medical care they required, could not pay for what was available, and had to find it where possible. If there had been a decent health care plan available, and if they could have paid for it, I doubt the incentives offered to them to be in the study would have worked at all. I also saw how the study could be invoked as “reparations” when the U.S. Food and Drug Administration (FDA) approved BiDil, a heart medication, only for African Americans. It was the first time the FDA gave government approval for a supposedly biological category called “race.” I could hear the same rationales for BiDil as I did in the voices of the PHS doctors of the study: African Americans are biologically different, they have distinct forms of disease, etc. It is crucial to see how beliefs about a social category called “race” become embedded in biology and the consequences of this. I wanted to make sure, as best I could as an historian, that the meanings of the study could not be raised so easily in this way.
Q: "This retelling,” you write in the epilogue, “will probably not change the myths, or the ways 'Tuskegee' tends to travel, or the political work it makes possible.” What do you hope your retelling might accomplish, and what audience would you most like to reach?
A: I hope that the book takes away from the simple black and white story that gets told, while the intertwining of racism and medicine gets better understood. I wanted to make the story mean more than the reason why we need informed consent in research, although of course I still think this is necessary to have. I’ve tried to explain why the doctors did it and to see them as more than just cardboard racists who had no ethical compass by focusing on some of the debate on the treatment for syphilis and the ways public health looks at populations, not individuals. I’ve explored the participation of the African American professionals in the study at Tuskegee University (then Tuskegee Institute) and Tuskegee Veterans Hospital who agreed to assist by doing the blood work and performing the autopsies. I’ve discussed what happened to the men and their families, and how some of them actually did get to treatment.
I hope the book helps a new generation to consider why we need health care reform and that we can stop invoking "Tuskegee" as a simple answer to the more complicated reasons for health disparities and the need for doctors to earn what other scholars have called “trustworthiness.” In the end, I hope the book provides a way to consider how assumptions about race fill in when there is medical uncertainty about a disease, and the dangers this can have for both individuals and the medical profession.
I am trying to reach the African American communities, academics, the media, those who work in the health care, or are considering participation in a clinical trial. I’ve put up a Web site that includes more data from the medical records, more photographs, a timeline, and an FAQ for the general public.