The Historical and Factual Development of the Tuskegee Syphilis Study, A Comparison of James H. Jones and Susan M. Reverby’s Monographs on the Study

 Sources:

    Jones, James H. Bad Blood, The Tuskegee Syphilis Experiment New and Expanded Edition. New York: Free Press, 1981, 1993.

     Reverby, Susan M. Examining Tuskegee, The Infamous Syphilis Study and Its Legacy. North Carolina: University of North Carolina Press, 2009.

The Tuskegee Syphilis Experiment (herein after referred to as the Study) involved four-hundred African American men selected to take part, against their knowledge, in a Study that took place between 1932 and 1972. The United States government subjected these men to lumbar punctures and after they had died an autopsy. Nevertheless, the government left these men under the assumption that the government doctors were treating them. In their books Bad Blood, The Tuskegee Syphilis Experiment New and Expanded Edition (herein after referred to as Bad Blood) and Examining Tuskegee, The Infamous Syphilis Study and Its Legacy (herein after referred to as Examining Tuskegee) by James H. Jones and Susan M. Reverby, respectively, had different emphases on the Study. Jones took more time to show the reasons why the Study started and why it continued. Reverby, only briefly provided the motivation behind the Study and reasons it continued, instead emphasized what happened to the doctors and patients after the Study and some of the abuses of the “Tuskegee” Study in other cases of bioethical violations. Jones made his argument from the perspective of the patients, in part because many of the doctors would not talk to him due to the poor media attention they had been getting. Whereas Reverby tried to present both the patients and the doctors sides fairly, and provided some credit to the counter-narrative of the doctors. Bad Blood, by James Jones, was the first book written on the Study. Jones was very active in the lawsuit that followed the Study and was able to interview some of the subjects and doctors involved in the Study. Reverby in her book, Examining Tuskegee, came much later and in many ways was indebted to Jones for some of his interviews and layout of the Study. However, to her benefit, she had previously classified resources, like the subjects’ medical records, at her disposal—resources Jones did not have when he wrote Bad Blood. From the differences in resources, some discrepancies between the two authors develop. For instance, whether the men could or did receive treatment, whether the women and children of the subjects were treated, and whether the Study had racist pretenses.  Finally, there were stylistic differences between Jones and Reverby that allowed Reverby to bring out more emotion from the reader and for Jones added to his credibility.  

Jones’s primary focus in his book was on why the Study started and why it continued for forty years. In summary, he argued that the Study started with the purpose of treating Negros with syphilis in rural communities. People thought of it as white man’s burden to take care of the Negro. Jones argued the germ theory had become popular and people worried that white man might contract some of the Negro’s germs. However, in the midst of the Great Depression, the Study’s funds were quickly exhausted. Everyone thought that the government Study was over. The Study was very successful as they were able to uncover a high concentration of syphilis in the Tuskegee community, the highest among the studied areas. This led one of the government doctors to the conclusion that this would be the perfect situation to repeat the Oslo Study, except with Negro subjects. Within a year after leaving, the government doctors were back in Tuskegee, this time for research rather than treatment, but the Negro subjects never knew that plans had changed.  The new plan was to perform several tests on the subjects over a year or so with the final test being a lumbar puncture, one of the more uncomfortable tests, and then conclude the Study. Things went along smoothly and the lumbar punctures executed, much to the dismay of the subjects, however, the results were not as definitive as the research doctors hoped. The only way to know what the effects of syphilis were on the subjects was to continue the Study to autopsy the subjects and find out exactly what role syphilis played. Therefore, the Study continued in order that they might autopsy the subjects. The only problem was that researchers had trouble getting the subjects back after subjecting them to the torture of the lumbar punctures. The government researchers had to bribe the subjects to come back with fifty-dollar burial stipends under the assumption that the government doctors could perform an autopsy upon their death. Particularly in the latter years, they began to receive letters questioning the ethics and science of the Study, but every time they had a council meeting, made up of rather biased council members, and every time decided to continue the Study. It was not until the media caught hold of the Study and released it to the public that the Study ended. Jones presented a chronological approach to the Study, how the Study started and why the Study continued from the subject’s perspective. Reverby argued in her book that Jones was limited in whom he could interview, because the media had painted the doctors in such a negative light, even to the extent of taking their words out of context, the research doctors were afraid to talk to anyone about the Study.[i] Jones carried his chronology out to a lawsuit, in which he contributed to through gathering evidence for the prosecution. Jones’s involvement in the study as well as the limitations placed on him by the media affected his view of the study.

Reverby, on the other hand, just summarized the Study in the first few chapters of her book and then turned to the effects of the Study on the subjects, the subject’s families, the nurses, the doctors and the society at large. The victims of the Study were rewarded monetary damage. Reverby argued that the free health care given to them by Congress was not sufficient because they already had that under Medicare. The government rewarded some of the monies to family members infected with syphilis through their relations with one of the subjects in the Study. Nurse Rivers was the coordinator of the Study and glue that held the Study together through her relationship with the subjects and their families. Although she would not say it on the record, when Jones interviewed her after the Study, she was one of the few involved in the Study to admit that they should have told the men they had syphilis and treated them rather than used them as guinea pigs.[ii]  In society, however, her name was ruined. “Rivers” became code for moral and scientific failure, racial and gender caste systems and misuse of power.[iii] The media lambasted the doctors who were involved in the Study. The media edited any comments the doctors made in such a way that it made them seem coldhearted and racist.[iv] After the Study, the doctors set up private practices until they retired. Reverby, because she wrote after Jones, was able to carry the effects of the Study through the presidential apology up to the Obama administration. Therefore, she was able to show different pieces of legislation that have come about because of the Study. These pieces of legislation included informed consent laws, the formation of panels for evaluation of the ethics behind future studies, and mandating participation of majority and minority races in future studies.

Because this legislation is in place, Reverby was particularly concerned about some of the mistaken facts about Tuskegee and the way in which people used Tuskegee as a metaphor in other studies with questionable bioethics. The first misconception that both Jones and Reverby noted was that government officials never injected the Subjects with syphilis. Reverby, argued this misconception came from three other cases, the first being the Sing Sing Penitentiary Study in the mid-1950s in which prisoner “volunteers” had syphilis injected into them.[v] The second happened at the Jewish Chronic Disease Hospital in Brooklyn in 1964-65 where researchers injected aging patients with cancer cells. The third happened at the state-run Willowbrook Hospital on Staten Island New York from 1963-66 where children suffering from retardation orally consumed a live hepatitis virus.[vi] All of these studies became public around the same time as the Tuskegee Study became public and so an intermixing of facts occurred. The myths about the Tuskegee Study, along with the facts, took the form of a metaphor that society used for bioethical violations as well as conspiracy theories to cast suspicion on the government. Reverby also used these studies to show that Tuskegee was just one of many studies that were taking place during this time and of those studies probably did not cause near as much suffering in the subjects. 

Months before Clinton’s presidential apology for the Study, the debate was taking place about the ATZ Study, where the National Institutes of Health and the Centers for Disease Control were conducting experiments on drugs used to fight HIV in Uganda. The researchers provided some of the subjects in this Study with experimental drugs but the controls were left without treatment. The fact that Uganda is a third world country where resources are scarce and medical attention slim have led some to use Tuskegee as a metaphor for the experiment. Conspiracy theorists have also used the Tuskegee experiment to draw suspicion on the government as the responsible party for HIV in African Americans, for which both Jones and Reverby argued is rather suspect. Reverby especially, argued that this was an inaccurate metaphor to use with regard to the ATZ Study and the HIV conspiracy. She argued that the counter-narratives of the doctors had some truth and therefore there must be some consideration of them in the Tuskegee story. In particular, the belief that latent syphilis would not cause any harm on the subjects[vii] and penicillin could cause reactions and be dangerous in certain circumstances. Often what the Tuskegee metaphor missed was the counter-narrative of the Tuskegee story. The Sing Sing Study showed the researchers that latent syphilis caused no further damage; the researchers at the Tuskegee Study were just working with the information from other studies. These counter-narratives were something that Reverby provided, which gave some credit especially when it came to the argument against the ways society uses “Tuskegee”.  Reverby, in the epilogue of her book, hoped that people would remember the Study but forget “Tuskegee” the metaphor. She argued that the United States no longer needs the metaphor to interpret injustice.[viii]

Reverby seemed to embrace this counter-narrative mentality in making an argument for both sides on particular issues. She argued the facts could go either way when she presented her arguments with regard to Nurse Rivers and Doctor Dibble. In the case of Nurse Rivers, she stated facts that showed Rivers was both a middle-class race traitor, who sought to make it in the white world, and as a powerless nurse who just followed the orders given to her by her superiors.[ix] She used the same argument for Dr. Dibble, a black doctor, at the local Tuskegee hospital. On the one hand, it was the only way for Nurse Rivers and Doctor Dibble to get the government’s aid and financial resources to help members of their race. There seemed to be times where they worked to treat some of the subjects. Nevertheless, they were major components of the Study and as such stood in the way of these men getting treatment. On the other hand, Jones presented only one view that painted Nurse Rivers as obedient to the doctor’s orders and Dr. Dibble as a black doctor who tried to make it in a white-man’s world. 

            Reverby and Jones had different resources at their disposal based on the time-period from which they were writing. Jones, with his influence in the lawsuit that followed the Study, was able to conduct interviews with some of the subjects, nurses and a few doctors that were willing to talk, despite the negative publicity they received from the media. He was able to speak directly with some of the victims of the Study and learn how they viewed the Study. By the time Reverby wrote her book, many of the subjects, doctors and nurses had died. Therefore, on numerous occasions throughout the book Reverby cited interviews done by Jones.  Reverby in her acknowledgement, argued she could not have written the book if it was not for the groundbreaking work done by Jones and the structure he laid out in his book Bad Blood. [x] Both Jones and Reverby did have access to correspondences and publications about the Study made by the government researchers. However, Reverby, for her part, did have resources like the subjects medical records, which was classified information when Jones wrote Bad Blood.  These medical records provided a new aspect to the Study when it came to the post-penicillin age and treatment. In 1945, when one-hundred-fourteen of the syphilitic subjects were still alive, fifty-eight of them had received penicillin. By 1971, only one of the subjects had not received penicillin.[xi] In most of the cases, these penicillin treatments were for other ailments diagnosed by the government doctors who referred the subjects to area doctors for treatment.  Painted in this light, the Study does not seem as dastardly and cruel as Jones made it seem. Jones argued the Study denied treatment to the subjects and blacklisted them from treatment at other area medical practices.

            Syphilis is a sexually transmitted disease; therefore, it is likely that some of the wives and mistresses might have had syphilis, who in turn, might have given it to their offspring during childbirth. Reverby emphasized this more than Jones; however, because of the resources at their disposal, they arrived at different conclusions. Jones argued that the women did not receive treatment and Reverby argued that many of the women were treated. Jones argued that those involved in the Study tested women for syphilis when the Study started to avoid suspicion.[xii] However, Jones argued that the Study excluded women because of depleted funding during the Great Depression and because of the difficulty of examining women for physical signs of syphilis. The doctors’ excuse for not allowing women in the government program was that it would require them to undress.[xiii] Nevertheless, Nurse Rivers was still involved in the whole family’s life of all the subjects. Many of the subjects thought of her as their family’s personal nurse so the women received some medical attention in that way. However, Jones gave no indication that the Study treated the women and family members of the subjects for syphilis. Reverby, on the other hand, found evidence to support that the wives and families of the subjects received treatment for syphilis. Reverby argued that the Study treated the subjects to make them non-contagious, or so they thought.[xiv] Nevertheless, many wives and family members found to have syphilis were able to find treatment before the Study ended.[xv] Again, the evidence that they had available when they wrote their respective books on the topic, affected how they perceived the Study. While neither author condoned the Study, Reverby, used the gained evidence, to paint a slightly different picture of the Study, a picture that, during the penicillin era, allowed for subjects and their families to receive treatment.

            The Study used about four-hundred African Americans, which has led many in the post-Civil Rights Movement to argue that the Study was racist. During the time-period leading up to the Study there was a general presumption that germs and disease acted differently in different races. The Study’s mission was to contrast the result gathered by its Study on the Negro male with the Oslo Study conducted years earlier on the effects of syphilis on Caucasians. However, was the government’s motivation primarily racist in setting up the experiment? Reverby argued that it was and Jones not nearly as adamantly. Reverby did cite a government doctor who argued that the Study was not racist; he argued that it was because of the high concentration of syphilis in Tuskegee not the subject’s ethnicity as why the Study occurred at Tuskegee. If the same levels of syphilis were present in the hillbillies of West Virginia, the doctor argued, they would have done the Study in West Virginia.[xvi] However, Reverby was unsatisfied with that answer; she argued that since they knew about the Study of Caucasians in Oslo, the government would not need to use the scarce resources it had to repeat it. Reverby even argued that the Public Health Service’s best men helped to shape the racist attitudes of the day.[xvii] Therefore, Reverby concluded that the motivation behind the Study was racist.

Jones, on the other hand, distinguished between the racism of some of the government doctors, the government and standard practice at the time.  Jones argued that many in the Public Health Service that worked in the public hospitals countered the views made by others in the medical field that race played a factor in the disease.[xviii] Public health officials believed more in the power of science than the weakness of any race. Jones did however argue that socially some of the health officials were racially inclined but not in their professional practice.[xix] The public health officials behind the Tuskegee Study were racial liberals by the standards of the 1930’s, Jones argued.[xx] He argued that for the public health officials, Tuskegee provided an opportunity to conduct tests on syphilis that was impossible to duplicate. The public health officials did believe that syphilis was a fundamentally different disease in the Negro than in whites; however, considering the time-period in which they were operating in they were surprisingly liberal, at least at the professional level. Jones also argued that Negros who could afford a private doctor or whose plantation owner provided a doctor for them, received the same treatment as a white person would. In practice, Negros and whites were treated the same if they could afford the treatment. As many of the subjects were poor, they had never seen a doctor when the government did offer free health care through the Study. They were a susceptible population. Nevertheless, professionally doctors considered the Negros as equal to whites and provided them with the same treatment but socially they had some racial tendencies. 

            Jones and Reverby had different writing styles. Reverby tended to try to appeal to the readers emotions. She would frequently add italics or place key words and phrases in quotation marks to draw attention to them in an effort to appeal to the reader’s emotions. In some instances, she added italics to some of the correspondences of the doctors to accent some of the racism in their views. Reverby accented the dehumanizing nature of the Study and thereby appealed to the emotions of the reader in that way. The men of the Study were not patients but subjects, part of the “other”.[xxi] Jones also refers to the men as subjects; however, he never emphasized it as much as Reverby.

            A second difference in style is what they call the nationality of the men. Jones used the term “Negro” as the researchers did in the Study. However, Reverby being more politically correct used the term “African American” or “black”. While they are referring to the same thing, the term “Negro” carries with it a different connotation in today’s society as a racial slur. However, Jones’s use of “Negro” also seemed to make the book seem more historically accurate. The term “African American” is a more politically correct term and Reverby likely used it in order that it would not offend members of the African American race who might read the book. 

            Jones was able to have access to eyewitness testimonies at his disposal when he was writing Bad Blood, a luxury that Reverby, when writing Examining Tuskegee, was not able to enjoy. However, because other documentation became available, especially the medical records of the subjects, Reverby was able to make some deductions from those records and use some of Jones’s interviews for her book. Jones best emphasized what took place at Tuskegee, why the Study started and continued for as long as it did. Reverby in a sense picked up where Jones left off.  She showed the effects of the Study with monetary payoffs for victims, defamation of the doctors and nurses involved in the Study as well as the formation of ethical standards for research, including the requirement of informed consent as well as representation from the majority and minority races in experiments. However, she also emphasized the intangible effect of the Study in the way people use the Study as a metaphor inappropriately.  Each author’s style added their own personal touch to the work and they used it to connect the reader emotionally, provided historical credibility and avoided offending a contemporary audience.

The Tuskegee Study was a dark part of United States history that spanned across seven presidential administrations, both Republican and Democrat. It continued through the Great Depression, World War II, the Nuremberg Trials, the invention of penicillin, the Cold War and the Civil Rights Movement. The Study did not end because the government saw the error of their ways but it took the media exposing the Study to the public to end the Study, and even then, it was a struggle. Forty-years these men suffered in ignorance about the nature of the Study and the disease that was eroding their bodies. The Tuskegee Study was not an isolated incident but was part of a much broader problem of bioethical standards that, to some extent, continues up to this day. The four-hundred men in the Study became human lab-rats for the government and because of the color of their skin, they endured many hardships as syphilis began to ware upon their bodies, all in the name of science, and all at the hands of the United States government.

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    [i] Susan M. Reverby, Examining Tuskegee, The Infamous Syphilis Study and Its Legacy. (North Carolina: University of North Carolina Press, 2009).  148

[ii] Susan M. Reverby,  Examining Tuskegee, The Infamous Syphilis Study and Its Legacy. (North Carolina: University of North Carolina Press, 2009). 181

[iii] Susan M. Reverby, Examining Tuskegee, The Infamous Syphilis Study and Its Legacy. (North Carolina: University of North Carolina Press, 2009). 184

[iv] Susan M. Reverby, Examining Tuskegee, The Infamous Syphilis Study and Its Legacy. (North Carolina: University of North Carolina Press, 2009). 149

[v] Susan M. Reverby, Examining Tuskegee, The Infamous Syphilis Study and Its Legacy. (North Carolina: University of North Carolina Press, 2009). 201

[vi] Susan M. Reverby, Examining Tuskegee, The Infamous Syphilis Study and Its Legacy. (North Carolina: University of North Carolina Press, 2009). 190

[vii] Susan M. Reverby, Examining Tuskegee, The Infamous Syphilis Study and Its Legacy. (North Carolina: University of North Carolina Press, 2009). 230-231

[viii] Susan M. Reverby, Examining Tuskegee, The Infamous Syphilis Study and Its Legacy. (North Carolina: University of North Carolina Press, 2009). 240

[ix] Susan M. Reverby, Examining Tuskegee, The Infamous Syphilis Study and Its Legacy. (North Carolina: University of North Carolina Press, 2009). 168

[x]  Susan M. Reverby, Examining Tuskegee, The Infamous Syphilis Study and Its Legacy. (North Carolina: University of North Carolina Press, 2009). X

[xi] Susan M. Reverby, Examining Tuskegee, The Infamous Syphilis Study and Its Legacy. (North Carolina: University of North Carolina Press, 2009).  124-127

[xii] James H. Jones, Bad Blood, The Tuskegee Syphilis Experiment New and Expanded Edition. (New York: Free Press, 1981, 1993). 120

[xiii] James H. Jones, Bad Blood, The Tuskegee Syphilis Experiment New and Expanded Edition. (New York: Free Press, 1981, 1993). 165

[xiv] Susan M. Reverby, Examining Tuskegee, The Infamous Syphilis Study and Its Legacy. (North Carolina: University of North Carolina Press, 2009). 24

[xv] Susan M. Reverby, Examining Tuskegee, The Infamous Syphilis Study and Its Legacy. (North Carolina: University of North Carolina Press, 2009).129-131

[xvi] Susan M. Reverby, Examining Tuskegee, The Infamous Syphilis Study and Its Legacy. (North Carolina: University of North Carolina Press, 2009). 149

[xvii] Susan M. Reverby, Examining Tuskegee, The Infamous Syphilis Study and Its Legacy. (North Carolina: University of North Carolina Press, 2009). 22

[xviii] James H. Jones, Bad Blood, The Tuskegee Syphilis Experiment New and Expanded Edition. (New York: Free Press, 1981, 1993).  32

[xix] James H. Jones, Bad Blood, The Tuskegee Syphilis Experiment New and Expanded Edition. (New York: Free Press, 1981, 1993). 40

[xx] James H. Jones, Bad Blood, The Tuskegee Syphilis Experiment New and Expanded Edition. (New York: Free Press, 1981, 1993). 172

[xxi] Susan M. Reverby, Examining Tuskegee, The Infamous Syphilis Study and Its Legacy. (North Carolina: University of North Carolina Press, 2009). 19