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Syphilis is a bacterial infection that is easily spread, particularly through sexual contact. Throughout human history, there were very few treatment options for the disease, which starts with a painless sore but can eventually progress to causing widespread damage to its hosts’ eyes, brains, and hearts.
By 1947, penicillin had become a wonder drug for so many conditions and infections. It would prove to be extremely effective in the treatment of primary (early) syphilis. After 1947, penicillin became the first line of treatment for most syphilis patients.
However, there was one group of patients to whom it was never offered, even though they were technically already involved in a medical study of the disease: the Tuskegee syphilis study. All of the men enrolled in that study, which ran from 1932 to 1972, were Black. They were induced to participate with offers of free physical examinations, meals on the days of those examinations, some treatment for other small illnesses, and the promise that their burial expenses would be paid.
The study was designed only to observe the effects of syphilis on the body. Even after penicillin was available, nobody involved with the study seemed to question why it was not being offered to individuals who were suffering from the disease.
That would begin to change when public health worker Peter Buxtun first learned about the study in 1966.
The Study Begins
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The Tuskegee Syphilis Experiment was never about treatment.
From its inception, the study administrators planned only to collect data on “the effects of the spontaneous evolution of syphilis on black males” (Jones). For their subjects, they selected men who already had advanced, or tertiary — there being three primary stages in the disease’s unchecked progression — syphilis.
There is some disagreement about whether the men were told, when they first enrolled in the study, that they had syphilis, and what that meant. When the story of this study first broke, in journalist Jean Heller’s Associated Press story, a member of the Atlanta Center for Disease Control told journalists that the subjects were informed of the disease and told they could leave the study to receive treatment. This assertion was countered by that of Dr. J. W. Williams, who had first assisted with some of the clinical work of the study, and suggested that, to his knowledge, study participants were not told what they had.
Not telling the men that they had syphilis, and how it was transmitted, was truly unfortunate, as syphilis can be passed, via sexual contact, to other people, and from pregnant women to their babies.
Through the 1930s, 40s, and 50s, the study continued. It was widely written about in medical journals and was extensively discussed at professional conferences. Particularly in the study’s early years, the lack of treatment of the participants’ syphilis would have been less shocking, the treatments at that time for syphilis were barbaric at best, lethal at worst.
However, with the development and deployment of penicillin for syphilis and other diseases in the late 1940s, the experiment’s continuation without any offer of treatment to the ill men it was studying became harder to overlook as an unethical medical experiment.
Peter Buxtun Starts His Career
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In 1965, Peter Buxtun was not thinking about a career in medicine. He was, in fact, doing graduate work in history. But when he saw an advertisement to work in San Francisco, in venereal diseases (VD) control, he thought it would be “a stitch.”
Among his first duties was to work as a contact tracer for the city public health department. Part medical staffer, part private investigator, he would get names of former sexual partners from individuals who were diagnosed with sexually transmitted diseases and then spend his time trying to track down those individuals to tell them they should be tested.
One day at this job, Buxtun heard co-workers discussing the case of an individual in Macon County, Alabama, who had been treated for advanced syphilis, and how this led to some controversy because the treated man was enrolled in a study that was not offering penicillin to its participants. As part of his job, Buxtun was periodically expected to write short papers on venereal disease and epidemiological studies. For his next assignment, he decided he would look into the syphilis experiment, and requested information about it from the Communicable Disease Center (now the Centers for Disease Control).
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Photo courtesy of the National Archives, at https://catalog.archives.gov/id/956127
Writing the First Letter
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In an interview he gave to James Jones, the author of the book Bad Blood: The Scandalous Story of the Tuskegee Experiment, in 1979, Buxtun recounted that after reading the information that he received about the experiment, he felt that the subjects had not really known what was being done to them, and this was the part of the study he found particularly disturbing.
Buxtun did his research, and by November of 1966 he was convinced that continuing the experiment was wrong. He decided to write a letter to Dr. William J. Brown, the director of the Division of Venereal Services. In it, he asked questions (particularly whether any of the men had been told what they were being studied for) and expressed his concerns about the ethics of the study.
Although he wrote a reply to Buxtun’s letter, Dr. Brown never sent it. Instead, he asked a colleague who was going to be in San Francisco to stop in and discuss it with Buxtun, and later invited him (at the government’s expense) to attend a conference on syphilis research at the CDC. Once there, Dr. Brown and several others involved with the study met with him and tried to defend their beliefs that the experiment was necessary and was actually good for the subjects, as they often received unrelated health treatments that they might not have otherwise.
Buxtun was not convinced.
Writing the Second Letter
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By the fall of 1968, Peter Buxtun had left his Public Health Service (PHS) job in San Francisco and enrolled in law school. Nearly two years had passed since he had written his first letter to Dr. Brown.
When he thought about the experiment, he was still troubled.
He drafted and sent a second letter to Brown, who was still in charge of the study. By 1968, the civil rights movement was challenging racist practices throughout the United States and protests over racial inequalities were frequent. When Dr. Brown received Buxtun’s second letter and showed it to Dr. David Sencer, his boss at the CDC, both of the officials became worried that the study could be easily misunderstood by the public, although it is believed they still did not think they were doing anything wrong.
Dr. Sencer then organized a panel to invite other medical personnel who had been involved with the study, as well as doctors who were not, to weigh in on its value and the desirability of continuing it. The only doctor who suggested that the patients had a right to be treated, Dr. Gene Stollerman, was the only doctor who had never been involved with or even aware of the study before he was asked to join the review panel.
In the end, both of Peter Buxtun’s letters had no effect. The doctors on the panel decided to continue the experiment.
Enter the Journalist
Buxtun had tried twice to bring attention to the troublesome aspects of the syphilis experiment and had used the strongest imagery he knew how to use, by comparing the experiment to medical experiments performed by the Nazis on their prisoners. He had gotten nowhere.
He still lived in San Francisco, and no longer worked in public health. But one day, in 1972, when he had the chance to tell the story of the Tuskegee experiment to a journalist friend, he took it. She asked Buxtun if he had documentation. He provided it for her, and eventually, the story found its way to a more experienced journalist, reporter Jean Heller, who worked for the Associated Press.
The article she wrote about the study ran in the Washington Star (and later The New York Times) on July 25, 1972, and it opened with this paragraph:
“For 40 years the United States Public Health Service has conducted a study in which human beings with syphilis, who were induced to serve as guinea pigs, have gone without medical treatment for the disease and a few have died of its late effects, even though an effective therapy was eventually discovered.”
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At last, the story was being told. A new advisory panel was formed and in October 1972 the experiment was ended.
The Aftermath
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This is a bare-bones recounting of the story of the Tuskegee Syphilis Experiment. Throughout the study’s forty-year history (and beyond), there are many instances where even the essential truths of the bare facts are not known. Were the subjects ever given some treatments for their syphilis? There is some indication that sometimes, they were. Did the medical personnel involved believe they were doing a greater good by monitoring these men and making them feel cared for, particularly when they suffered from unrelated ailments? Again, there is some indication that the answer there is yes. For a comprehensive history of the study, two books, in particular, that might be of interest are James Jones’s Bad Blood and Susan Reverby’s Examining Tuskegee.
In 1974, a class-action suit on behalf of the individuals who had been in the study was filed, and the government offered a settlement of 10 million dollars and continuing health care to the participants (and eventually their families).
For readers who think this story is so long ago as to not be relevant to today, consider the fact that, as the world’s governments and pharmaceutical companies attempt to create and distribute a safe and effective COVID-19 vaccine, the issue of people’s trust in medicine will become an important one.
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Peter Buxtun noted in much later interviews that he never intended to become a whistleblower. He was simply a person who was bothered by a medical experiment and procedure that seemed unethical to him. Like the majority of whistleblowers, he took a risk when he started writing letters and asking questions of the doctors in charge, not least the risk of losing his own job in public health. But due to his actions, a poorly conceived and unethical medical experiment was finally halted.