Several times in the last couple of weeks, I’ve come across articles discussing the legacy of the Public Health Service’s study of untreated syphilis in Alabama in relation to COVID-19 and the high mortality rate among African American communities in the U.S. Along with my students, I’ve recently finished re-reading Susan Reverby’s (2009) book on this study. One of the key issues that Reverby highlights in this book is how it is possible to think we “know” what happened in relation to this study, which is frequently referred to as “The Tuskegee Study.” In reality, our understandings have been influenced by published accounts that represent partial truths and even mistruths. For example, I have seen a published article in which the author claims that the participants of the untreated syphilis study were injected with syphilis. As Reverby relates, there is no evidence that this occurred. This kind of fallacy, however, has entered public understanding due to the ways in which The Study has been reported on over decades since its ignominious conclusion in 1972. And it is these understandings of The Study that are referenced in the articles that relate it to the current COVID-19 pandemic.
Reverby’s book is organized into three sections: Testimony, Testifying, and Traveling. Part One’s five chapters review what happened in the study, which first began in 1932 by the Public Health Service. Readers learn about how the study was facilitated by staff at the Tuskegee Institute. Reverby relates points at which the study could potentially have come to an end – along with the ways it continued. As one example, physician Irwin Schatz, among others, on reading a 1964 article in the journal Archives of Internal Medicine, was appalled and wrote a letter of protest to the PHS that was never answered. The study did eventually come to an end when Peter Buxtun, who had worked for the Public Health Service, provided an Associated Press reporter with information about the study. The story was turned over to a more experienced journalist, Jean Heller. Publication of details that participants of the study had not been treated when strides in medical treatment had been made in the 1940s caused an uproar. Reverby also outlines the special committee’s work looking into the study, congressional testimony, and the lawsuit that sought reparation for the participants and their families. Some of the details that are frequently omitted in retellings of what happened are the understandings of how to treat syphilis that developed over many decades, and how these changed over time. For example, treating patients with syphilis in latent stages could be potentially fatal. Reverby also relates how some people who were part of the “untreated” syphilis group did not actually have syphilis; as well as the assumptions concerning racial health disparities, and in particular the course that untreated syphilis was believed to take among black and white populations. Reverby also recounts on the possibility that some of the participants of the study actually were treated by other physicians who were unaware of their participation in the PHS study.
Part two of the book looks in more detail at the perceptions and understandings of the study from the viewpoints of different stakeholders: namely, the participants, the PHS doctors, Dr. Eugene Dibble from the Tuskegee Institute, and the nurse who was involved with the study: Eunice Verdell Rivers Laurie. By contrasting what might be learned from these stakeholders, Reverby again complicates any simplified understandings of what happened. In Part three of the book, Reverby traces the discourses that have developed around the study that we can find in music, documentaries, ethics texts, a play and film (Miss Evers Boys). How is the study understood in contemporary society? What does this mean for our understandings of “scientific research”? She then recounts how the public apology from President Bill Clinton, in 1997 came about.
Susan Reverby’s book relies on data from numerous archives around the country, including those in Alabama, Tennessee, Georgia, Maryland, Michigan, Pennsylvania, and Missouri. Reverby also interviewed many people who were in some way connected to the study, or who could provide insight into what happened. One of these, for example, was James H. Jones, author of the book Bad Blood (Jones, 1981, 1993), who had assisted in locating files for Fred Gray, the attorney who led the lawsuit on behalf of the study’s participants. That this book is a labor of love is apparent in the length of time it took to research and write it, as well as the care that Reverby takes in documenting the assertions she makes. This book provides an excellent example of the attention to detail required of researchers using archival methods along with the artistic flair required to share the story. It also provides a deeper understanding of why there is much mistrust of the public health initiatives among particular groups in the U.S. today, and a timely reminder to researchers that they must always take every step to conduct ethical research studies that appropriately inform and care for participants.
Jones, J. H. (1981, 1993). Bad blood: The Tuskegee syphilis experiment (New and expanded edition ed.). Free Press: New York.
Reverby, S. (2009). Examining Tuskegee : the infamous syphilis study and its legacy. University of North Carolina Press: Chapel Hill.