In 1972, a whistleblower revealed that the United States Public Health Service (USPHS) had withheld syphilis treatment from hundreds of Black men as part of a 40-year study observing the natural course of the disease. The experiment’s subjects – the majority of whom were sharecroppers from rural Alabama – believed they were undergoing treatment for “bad blood”, a colloquial name then used for a host of conditions, including venereal diseases. Instead, they received placebos and inadequate medical care, even after penicillin emerged as an effective, readily available treatment for syphilis in the mid-1940s.
The Tuskegee syphilis study, as the experiment is often called today, began in 1932 with the recruitment of 600 Black men, 399 with syphilis and 201 without, to serve as the control group. Initially intended to run for six months, the study continued for decades. Unwitting participants lured in by the promise of free medical care, hot meals and burial insurance returned regularly for aspirin, tonics, blood draws and the occasional spinal tap. But none of these treatments do any good for syphilis, and 128 of the men ultimately died of the disease or complications related to it.
When news of the study broke, Chuck Stone, a journalist and former Tuskegee airman, responded with an impassioned editorial, writing: “It either takes a tough constitution or a rancid morality to sit quietly by and watch 200 men die without doing anything about it. I call it genocide. Have you got a better name for it?”
Historians have had decades to pore over the study’s archives. Now, the National Library of Medicine has made a collection of those documents available for public viewing online. Anyone with an internet connection can read the primary source material – hundreds of pages of administrative records, letters and meeting minutes.
No one would expect the portrait this collection paints to be pretty or redemptive. Indeed, the study has gone down in the annals of American history as one of the most notorious, but by no means only, examples of medicine at its most prejudicial, virulent and unethical. Even with this knowledge, it is galling to read about the lengths to which USPHS doctors went to ensure their patients were denied treatment.
Immobile and malleable
A 1948 history of the study makes it clear that the choice to set the experiment in the deep south was deliberate. As the paper notes, the study followed a broader survey of syphilis in the still deeply segregated region. Sponsored by the Julius Rosenwald Fund, this earlier programme aimed to assess the prevalence of the disease in several southern counties and make sensible plans for its treatment – a starkly different goal than the Tuskegee experiment.
The USPHS drew on this data to identify Macon County, Alabama – the surveyed area with the highest prevalence rate of syphilis – as the right place for a new study. Macon County also had high poverty rates and low education rates, ensuring the experiment’s subjects would be both largely immobile and malleable.
Another contributing factor was the presence of the venerable Tuskegee University, a historically Black college then known as the Tuskegee Institute, which had the facilities necessary to carry out the autopsies and lab work the study required.
Always a hurdle was a 1927 Alabama state statute that required medical personnel to report and treat all cases of syphilis. But enforcement of this statute was so lax that the experiment could have continued unimpeded had it not been for the 1942 draft, which led the local Selective Service Board to unmask the syphilitic status of the study’s subjects. The board’s charge was to evaluate individuals for military service, a process that required testing for venereal diseases and mandatory treatment for those affected.
R.A. Vonderlehr, the assistant surgeon general and one of the originators of the study, jumped into action to prevent the subjects from receiving treatment. He wrote urgently to local health officer Murray Smith, asking him to pull some strings to get the study subjects exempted.
“I would suggest that you confer with the chairman of the local Selective Service Board,” Vonderlehr wrote. “I believe he is an old friend of yours, and I would inform him of all the circumstances connected with the study. It is entirely probable that … he will cooperate with you in the completion of the investigation.”
Smith made good use of his social connections, managing to get the 256 remaining syphilitic subjects exempted from treatment. Likewise, when the same matter reached D.G. Gill, director of the Alabama Department of Health’s Bureau of Preventable Diseases, he requested Vonderlehr’s advice on whether to “make an exception of these few individuals” to avoid “encroaching on some of your study material”.
Effective treatment denied
Even in the postwar period, when penicillin became widely available – replacing the arguably ineffective and dangerous arsenic-based syphilis treatments that had preceded it – the study ploughed ahead, still more committed to documenting the disease than treating its sufferers. There was nothing unwitting about this denial of treatment.
Indeed, the archive shows that subjects were explicitly and repeatedly lied to for decades so they wouldn’t seek treatment for syphilis on their own. Even the form letters they received bore the hallmarks of a scam. They were invited to a “special examination” with government doctors waiting to give them “special attention” to “find out how you have been feeling and whether the treatment has improved your health”. Some of these notes were signed by Smith, who was designated just below his signature as a “special expert” to the USPHS.
And then there were the spinal taps, which were widely hated by the study subjects for the severe headaches they caused – and because the men worried the procedure “robbed [them] of their procreative powers (regardless of the fact that I claim it stimulates them)”, wrote physician Austin V. Deibert in a 1939 letter to Vonderlehr.
Deibert continued, telling Vonderlehr the USPHS might have to cancel the spinal test for the sake of the study’s continuation. “All in all and with no attempt at humor,” he said, he was the one with the real “headache”.
Neither the second world war nor the early civil rights movement seemed to move the subsequent generations of study staff and administrators. The study was widely known in medical circles, thanks to the dozen or so articles on its findings published in prominent journals. Though outsiders started criticising the experiment in the 1950s and 60s, these dissenting voices were few and far between.
The first confirmed critique of the study from outside the USPHS arrived in a 1955 letter written by physician Count Gibson, who had heard a USPHS official explicitly state that the study’s subjects were not informed that treatment was being withheld.
Though Gibson was reportedly unsatisfied with the response he received, his colleagues urged him not to pursue the issue for fear that speaking out against these very powerful men might jeopardise his own career. He let it drop. In 1964, cardiologist Irwin Schatz voiced similar concerns, writing a letter that also questioned the study’s ethics. He never received a reply.
Concerns waved off
Indeed, the study directors continued to wave off concerns. As a set of meeting minutes from 1965 put it: “Racial issue was mentioned briefly. Will not affect the study. Any questions can be handled by saying these people were at the point that therapy would no longer help them. They are getting better medical care than they would under any other circumstances.”
In 1970, Anne R. Yobs, a co-author of one of the published papers, acknowledged that the research should come to an end. In a letter to the director of the Centers for Disease Control, she recommended closing the study, not because the charges of racism and unethical practice that had started to pour in were merited, but rather because “changes at the program level … in sensitivity to (potential) criticism” had forced administrators’ hands.
The study had become “an increasingly emotionally charged subject”, preventing “a rational appraisal of the situation”, wrote James B. Lucas, assistant chief of the USPHS’s Venereal Disease Branch, in a memo that same year.
By 1972, Peter Buxtun, a USPHS venereal disease officer who had spoken out against the study within the organisation for years to no avail, had had enough. He went to the press.
Jean Heller, an Associated Press journalist, broke the story that July. A few months later, an ad hoc committee organised to evaluate the study finally ended it.
The Tuskegee study’s legacy has reverberated across the decades. In 1974, the NAACP, a civil rights organisation, successfully sued the federal government for US$10 million (£7.8 million), distributing the settlement money to the study subjects and their surviving family members. In 1997, President Bill Clinton publicly apologised to the men, acknowledging that what the USPHS had done was “deeply, profoundly, morally wrong”.
The study has had a material impact on medical outcomes within the African American community more broadly. Over the past several decades, researchers have connected the experiment to lower life expectancy among Black men due to broken trust in the healthcare system. More recently, the COVID pandemic and subsequent vaccination efforts reignited discussions about Tuskegee’s impact on medical mistrust.
Susan Reverby, the preeminent historian of the Tuskegee syphilis study, argues that the experiment’s legacy is far more complex than commonly stated, in no small part because of how it has been viewed historically. She notes that tying medical scepticism directly to Tuskegee erroneously suggests that the “reason for mistrust happened a long time ago”, thus turning attention away from the structural racism of today. As historian Alice Dreger succinctly puts it: “African Americans who distrust the health care system see plenty of reasons all around them to do so. They don’t have to look back 40 years.”
Perhaps, in this light, the most important takeaway from these digitised documents is not the starkly racist, unethical enterprise they so vividly record. It’s easy to condemn Vonderlehr, Smith, Yobs, Deibert and the countless others in the story whose actions are deeply troubling. But it’s more useful to observe how professional credentials and networks, philanthropic funding, warped notions of the greater good, and devotion to the scientific method provide cover to racism – and even prop it up. For it is often in these more quotidian spaces of life that racism in medicine persists.
Caitjan Gainty does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.
This article was originally published on The Conversation. Read the original article.
