The Perkins Perspective | Reviews | Winter 2014
Review: Examining Tuskegee and the Infamous Syphilis Study
By Nicolle Seward
Examining Tuskegee: The Infamous Syphilis Study
and Its Legacy
Susan M. Reverby
The University of North Carolina Press (2009), 424 pages
Reverby’s research led to her pursuit of justice for the men: She took part in beginning the bioethics institute at Tuskegee University; and she campaigned for a national apology for those in the study. Finally, in 1997, President Bill Clinton issued a formal national apology.
Additionally, Reverby edited a volume of primary and secondary resources, Tuskegee's Truths: Rethinking the Tuskegee Syphilis Study. She’s also published articles on Guatemalan syphilis studies that she uncovered while reviewing Tuskegee documents.
Her latest book, Examining Tuskegee: The Infamous Syphilis Study and Its Legacy, is a comprehensive analysis of her research. In it, she accounts for the way participants, family, and health professionals perceived the study. She also points out the misconceptions about the study, and how these narratives have shaped perceptions on, and changed, the ethos of American medicine.
“For this book, the availability of men’s medical records changes some of what can be known. The time that passed between when the study ended and I began this research in the early 1990s meant that some individuals had passed away and that others could tell the same stories over and over inflected by the fictions that abound no matter what I asked” according to Reverby (p. 6).
This mishmash of fact, fiction, and memory led to another question: Why is the study remembered in particular ways?
In the Beginning
When the study began in 1932, the prevailing belief about racial differences in untreated syphilis in African-Africans was that white men would have more neurological problems in late syphilis; black men would have more cardiovascular problems.
United States medical employees of the Public Health Services (PHS) were interested in the differences in the natural history of syphilis between blacks and whites, and so settled in Tuskegee, Alabama, to study syphilis among 600 black male participants. These PHS officers, including the services’ head Taliaferro Clark, felt justified in conducting this study based on prevailing racial theories. Theorized Clark, “‘… syphilis in the negro is in many respects almost a different disease from syphilis in the whites’” (p. 136)
As penicillin became available in the 1940s, the study appeared to protect its research interests by claiming that they were unsure if penicillin cured syphilis in its later stages. They did not inform the participants that there was treatment available. In 1972, the research project came to a close when it made national news as a government scandal. Two major consequences resulted: regulations to protect human rights in medicine and research, and a lasting medical mistrust among African-Americans.
It is this complex tale of history that Reverby tries to unravel.
A Lasting Effect on Medicine
The act of unraveling required a unique historiographical approach: dividing the book into three sections in order to represent different narratives equated to testimony, testifying, and traveling.
The first section on Reverby’s reconstructing history based on primary resources material. She draws on the “differing communal explanations for the truths” to testify in section two. The final section demonstrates the mobility of the story as it traveled from the press into American lore, the black press, music, fictionalized plays and movies to produce narratives to justify medical mistrust and conservative counter-narratives to describe this distrust as black paranoia.
Examining Tuskegee deepens the understanding of the Tuskegee syphilis study through analysis of the reasons why the study began and why it continued for so long. But she also includes the limitations of her own analysis and alternate explanations for events.
While researching, Reverby began to write herself into Tuskegee’s legacy, as well. In hopes of restoring the trust of the black community over time in physicians and researchers, Reverby was a part of the Syphilis Study Legacy Committee that prompted President Clinton issuing the national apology. Meanwhile, she had also been working with Tuskegee University to develop what would become the National Center for Bioethics in Research and Health Care to ensure the men of the study would not be forgotten ― and that ethics in research would always be held in the highest respect.
Although the 40 years the Tuskegee syphilis study ran, another 40 years of confusion and consequences followed. Thus, Reverby seeks to provide a more accurate historical account of what happened in the Tuskegee syphilis study, as well as provide answers as to how it affects medicine and ideas of race today. In her book, Reverby provides an insightful and complete history of the 40 years that the Tuskegee syphilis study ran, but she provides only a very short, incomplete analysis on Tuskegee’s aftermath that still affects medicine and ethics 40 years later.
Beginning with the history of the Tuskegee study from its pre-penicillin era, Reverby makes clear the original intent of PHS and how the study started. The syphilis study was made possible with the cooperation of the Tuskegee Institute and black physicians and nurses, rather than what is commonly believed as white doctors subjecting blacks to their research purposes. While Reverby acknowledges that the basis of the study was wrong and demeaning in the racial differences implied in the scientific racism used to justify the studies genesis and continuation, she concludes that PHS began the syphilis research in an effort to improve medical practices in African Americans.
These intentions, however, seemed to fluctuate with the historical and material shifts around the study. When penicillin entered the picture in the 1940s, Reverby explains, researchers argued either that it was uncertain how penicillin affected those in late syphilis or that it was not the role of PHS to provide treatment, which in effect, contradicted PHS’ earlier goal to improve medical practices in blacks.
Over the 40 years of the study, the controls and syphilitics were changed in both study results and death records. Additionally, it is unclear how many men in the study were treated with penicillin. These inconsistencies in research practice and records make it difficult to interpret the intentions of PHS, whether they intentionally withheld life-saving treatment to participants, if they were guilty of misinforming the participants, or both.
As an undergraduate with limited exposure to prior articles and books on the study, I found Examining Tuskegee challenging on several levels. To begin with, Reverby argues that “knowing what happened and why it matters in medicine and American life might get us a little closer to a goal of justice” (p. 10). But the three sections aren’t integrated and analyzed in a manner linear and coherent enough to explicate the “so what?” question for non-historians.
For example, in dealing with the cultural productions related to the study, Reverby attempts to explain how Tuskegee is envisioned in the minds of Americans through a discussion of the play and movie Miss Evers’ Boys and The Tuskegee Airmen, a film about black World War II pilots. The first two cultural productions fictionalize the story of Eunice Rivers, the black nurse who helped the white physicians launch and maintain the study. The latter focused on the story of politics transcending assumptions about racial inferiority under the Jim Crow regime.
In the end, I was distracted from making sense of the ideas circulating about the actual study by Reverby’s shifting to claims about how the real life subjects were “newly reracialized and resexualized” as they are dancing, and drinking in nightclubs and “factual confusions” due to the conflation of the two different historical events (p. 215). These theories about demeaning representations, however, didn’t make it apparent that Miss Evers’ Boys contributed to Tuskegee myths and increased to medical mistrust in the black community.
Reverby moves on to contrast the development of the drug, BiDil, and global clinical trials in HIV to the Tuskegee Study. The marketing of BiDil, an African-American drug for heart disease, bears a striking resemblance to the Tuskegee study in the belief that blacks are biologically different. While unethical clinical trials involving pregnant human subjects infected with HIV/AIDS studies in Africa used a similar argument used by Tuskegee researchers to protect their research. The researchers argued that had they not performed research in Africa, no one would have received treatment, and using a control provided quicker results to help Africans.
Pregnant women with HIV/AIDS were given the impression that they were receiving treatment, and similarly to the Tuskegee experiment. But this was not necessarily true for those in the control group. More importantly, at the time of these studies, patients living in the United States received the standard of care. The researchers argued that had they not performed research in Africa, no one would have received treatment, and using a control provided quicker results to help Africans.
As a freshman contemplating a career in medicine, and newcomer to the Tuskegee Syphilis Study, I didn’t find her arguments as compelling or novel as they might have been. The multidimensional aspects of the book might have been too overwhelming.
While Reverby draws on rich primary and cultural sources to represent Tuskegee’s legacy, I was left hungering for a more rigorous analysis and coherent argumentation on the significance of her exploration. I felt she didn't fully articulate her position on the relationship between Tuskegee, contemporary discussion on scientific racism, emerging ethical dilemmas, and medical mistrust. In the end, I’d argue Examining Tuskegee is not for those looking to learn about the “legacy” part of the Tuskegee study. While it contains an excellent historical account of the Tuskegee syphilis study and post-study events, this book may not be the best point of entry into bioethics studies for those seeking to understand Tuskegee in the context of its outcomes.
Reverby does provides more accurate picture of the Tuskegee story, with hopes of putting to rest myths and to help us move us away from its metaphoric use to capture ongoing medical mistrust. Reverby ends her book on an optimistic note: “I have then what is perhaps a strange hope for a historian: may the Study be remembered but may ‘Tuskegee’ be forgotten ― because we no longer need it to interpret injustice” (p. 240).
I concur on some level. While the Tuskegee syphilis study may need to be forgotten to heal the survivors, families, and even the black patient-to-doctor relationship, those who are oppressed and disadvantaged must always be remembered in medicine, and Tuskegee no longer need be a reminder of justice.
Nicolle Seward was born and raised in Goldendale, Washington. She plans to major in physiology at Seattle Pacific University and intends to become a pediatrician. She enjoys playing soccer and spending time with family.
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