Laying The Trap 1
The facts and fictions that brought a new "treatment" program to Tuskegee
The stock crash had taken both Julius Rosenwald’s fortune and his program to treat the people of Macon County. Upon surveying this same county, with its high level of syphilis and next to no public health structures, Dr. Taliaferro Clark had an idea of what to do with this vacuum. He suggested that the U.S. Public Health Service observe and study the course of the disease in Black men. Clark also suggested that by observing and not trying to treat the disease, the PHS would save a lot of money.
And how would the PHS get these participants? By disguising this observation study as the very treatment program Rosenwald had initially promised.
“It is my desire to keep the main purpose of the work from the negroes in the county and to continue their interest in the treatment,” wrote Dr. Clark’s successor Dr. Raymond Vonderlehr years into the study, knowing full well there was no treatment to ever be provided to the participants.
The general understanding most of the Black residents of Macon County had was that the Tuskegee Syphilis Study was a treatment opportunity in a place where hardly anyone ever got treated for anything, let alone a painful and debilitating illness most of them contracted at birth. The PHS doctors ran with this and did all their outreach and marketing of the study with the explicit promise of free treatment and health monitoring. The general understanding today is that The Tuskegee Study was a trick, but that understanding has been clouded in recent times by some generous mythmaking. Harriet Washington seeks to clarify this in her final chapter of part 1 of Medical Apartheid. There are a few key facts that cut through the noise that would follow, retroactive claims in defense of the actions taken or assertions that what happened wasn’t intentionally misleading. The records, the actions, and the statements of intention by the doctors (written and verbal) show otherwise. Deception for the express purpose of experimentation was not an unfortunate blunder, it was the crux of how the PHS doctors gleaned the information they were seeking.
Some bedrock facts about this nightmare that are commonly misremembered:
The study would last from 1932 to 1972. Different doctors would come on board, but would all adhere to the same strategy of deception.
The study would involve about 400 Black men who believed they were receiving treatment for their disease.
The doctors from the very first year of the study withheld the current state-of-the-art treatment. And this would be the case with each year of the study, as treatments evolved and became more and more effective, the PHS doctors simply would not administer them.
It was critical that the doctors follow the subjects to the death, as they wanted to examine their bodies post-mortem and get a fuller picture of what the disease did to a Black person over a lifetime.
No one was injected with syphilis or infected in any way by any medical health professional throughout the duration of the study. While there are other instances of African Americans being nonconsensual infected with diseases for experimentation, this myth arose from bad journalism and some reasonable fear.
Now, it’s important to understand the doctors’ (and the medical establishment at large) view of Black people with syphilis. Because the natural question after you first learn of something as awful as this study is why? Of course, trying to pin down “good reasons” for racism can be pointless as the reasoning tends to always come down to fiction made up by one group that excuses real harm to another group. There is no good excuse for Tuskegee, beyond the academic, scientific, and economic advancement of a group of doctors at the expense of Black lives.
The doctors throughout the course of the study wrote down their thoughts about who they were observing, with the commentary consistently veering towards a racist fatalism. They believed the “problem” of Black people would be solved by this disease, as it would infect and kill “all” of them in good time, that Black people could not control themselves sexually and were doomed to be infected, that a pervasive lack of morality condemned them, that “we have no further interest in these patients until they die.1” Embedded explicitly in their writing, as Washington shows, again and again, is this belief that these men were living cadavers and human incubators of a disease that the doctors were eager to watch slowly and painfully destroy their hosts. Tuskegee was only a massive aberration from how doctors treated their White patients, not their Black ones. At this time, there was a common understanding that you didn’t trick people into thinking they were being cured when you were taking notes on how they were dying. This wasn’t the breaking point in which we as a society demanded this kind of ethic from “here on out”. It was a pre-existing line that Taliaferro Clark, Raymond Vonderlehr, Oliver C. Wenger, and Thomas Murrell crossed with their eyes wide open.
I am reminded of Chris from Jordan Peele’s Get Out being invited for a “relaxing weekend with the family” and a cup of tea. A promise extended, a waiting trap door underneath the very thing promised. No one is coming over willingly for their body to be snatched and studied. The Tuskegee Study doctors and organizers knew that this specific population would be wary of experimentation, lies, and post-mortem autopsies. So all the communication focused on promising “free special treatment” from the US government and “free burials” that were written off and secure. The residents read outreach material that understood and then weaponized their fears to get them in the door.
But what was there to gain? In 1933, only a year into the study, PHS officials were discussing (as Washington chillingly quotes word for word) “bringing the cases to autopsy”. As mentioned above, the plan was always to get access to death in real time. But this underscores the attitude that put this study together: years into the study certain new antibiotics were treating syphilis wonderfully. The doctors were quoted hoping that the treatment and its growing availability “would not affect their numbers”! When 1943 rolled around and penicillin became a widespread treatment and was through PHS’ own network dispensed around the country, the doctors decided to withhold the penicillin from the Tuskegee men as now there would be fewer infected people in the country, and that made this particular group even rarer for study. The more cures came into being, the more the PHS dug in to exploit the men as these men were among the few left untreated! As the men died off of the disease, secret autopsies were carried out and the findings were published unbeknownst to the families in medical journals. This access allowed kind of lifetime access to these sick men and offered the doctors ample opportunity to write scores of academic papers, join organizations, and gain greater fame within the medical community. The study was the perfect “career hits” farm to harvest from professionally. The curiosity about what syphilis would do to a person was the point. When the doctors took their findings to the American Medical Association meeting in 1936, they presented their findings to a group of White physicians. Black doctors were mostly barred from membership in the AMA, so these findings would not hit their radar for some time.
All of this information contextualizes what followed, but it also illuminates how the most jarring part of this tragedy is not that it was done in the dark, but right in plain sight. That the AMA, the US government, or the medical establishment that sat through the presentations, shifted through the reports, published the findings, and listened to the planning and did not stop it is almost worse than if the entire experiment had been carried out in some verified villain’s basement. We often miss virulent forms of racism because we are looking to witness someone nefarious and evil-looking throwing on their white hood, not a regular, old doctor putting on his white coat. But racism isn’t always about what is said or done, but what is not done. It’s about the questions that don’t get asked. How comfortable the doctors who proposed and carried out this study had to be to think this up in the first place and then ask for funding. Yes, the horror is in the dead bodies and the lives warped by a fake cure that did not save them. But it’s also in the day-to-day, total banality of the people who saw them dying and did nothing to stop it.
O.C. Wenger, PHS senior officer for syphilis programs