The Lost Lesson of Tuskegee (guest post)
The UnitedHealthcare shooting is grim a reminder that delay and deny are synonyms for withhold
I strictly refrain from naming my employer in these pages, to emphasize the fact that I’m not speaking for them here. But I’m aware it’s not hard to figure out who my employer is and it’s not hard to know that things feel politically tempestuous these days. Not the time to rock the boat, really. On the other hand, my husband, , is free to rock the boat as much as he wants! Here’s his view of recent dinnertime conversations. My view will follow in a couple months once some dust has settled.
The Lost Lesson of Tuskegee
DEC 19, 2024
In the Spring of 2021, I received my first two doses of Covid mRNA vaccine at a mass vaccination clinic set up in a county rec center. Remembering that my brother had a recent history with bad respiratory infections, I urged him to get vaccinated. He said he was worried about the vaccine “because Tuskegee.” At the time, I was listening to the brilliant podcast Way Down in the Hole, in which hosts Jemele Hill and Van Lathan Jr. discuss each episode of The Wire. My brother’s thinking (or lack thereof) brought to mind an episode in which Jemele, in response to Van’s mystifying dislike of Popeyes spicy recipe said, “I so want to call you the N word right now.”
I suppressed my “N word please” reaction, took a deep breath, slowly exhaled, then respectfully asked “what do you mean when you say ‘Tuskegee’?” It turns out my brother, like most Black people, entertained the false belief that the organizers of the Tuskegee Study of Untreated Syphilis in the Negro Male (TSUS) secretly injected study subjects with syphilis - and he was concerned that the new Covid vaccines might likewise contain an infectious agent that would intentionally target Black men. My brother is an intelligent man whom I love very dearly. But seriously. I had to suppress an urge to shake him by the shoulders. I’m pleased to say that the calm conversational tone I managed to muster worked well for convincing my brother to reconsider and go get the shot.
My brother’s outrageous misapprehensions led me to something of a deep-dive into TSUS history. The opening sentence of a recently constructed TSUS memorial outside the National Library of Medicine succinctly summarizes the actual history:
The study, which was conducted without informed consent and withheld treatment...1
Unfortunately, my deep-dive taught me that the plaque’s emphasis is wrong. Entirebooks have been written about the fact that TSUS volunteers didn’t understand what they were signing up for, but an African American physician named Robert White has written a series of scholarly articles about the issue, and his arguments persuade me that the question is very complex, and it has been clouded by implicit class bias. When I project myself into the shoes of TSUS volunteers, the first thing I’m aware of is the fact that the Jim Crow South denied them access to education. When thinking about Tuskegee, I have to cognitively correct for my embarrassing upper-class, well read, subconscious gut instinct to think uneducated people are stupid. TSUS volunteers were intelligent autonomous adults. It’s a repulsive bigoted mistake to infantilize them as helpless victims. It’s also a gross oversimplification that gets in the way of learning the full range of lessons the TSUS disaster should have taught us.
The actual headline of TSUS is tidily encapsulated in the single word “withheld.” The lack of informed consent was only important because it was one of the methods TSUS organizers used to abusively withhold treatment. Withholding treatment was the fundamental ethical breach. The most horrifying aspect of the disaster wasn’t the fact that the volunteers in TSUS weren’t made aware of the medicines that could cure them of syphilis; rather, it was the fact that when some of the men independently learned about penicillin, the study organizers refused to give it to them, and told them not to seek it out at other facilities. White’s research has uncovered evidence that quite a few of the men refused to be victimized, and these men successfully received penicillin at a rapid treatment facility in nearby Birmingham. Again, it is a mistake to infantilize these men - they were individual human beings. Some of them recognized the abusive medical withholding for what it was and heroically defended themselves against it. When my brother initially refused the Covid vaccine, he was effectively doing the opposite. Without the calm and respectful advice of a loving brother he would have self-enrolled in his own private Tuskegee Study.
How did we slip into this bizarro opposite universe where the central lesson of TSUS has been turned completely upside down in many people’s minds? One part of the problem is illustrated by President Clinton’s choice to play with identity politics instead of explicitly enunciating the medical withholding problem in his 1997 speech apologizing for TSUS. Clinton said:
To our African American citizens, I am sorry that your federal government orchestrated a study so clearly racist. That can never be allowed to happen again. It is against everything our country stands for and what we must stand against what it was....The legacy of the study at Tuskegee reaches far and deep, in ways that hurt our progress and divide our nation. We cannot be one America when a whole segment of our nation has no trust in America...We need to do more to ensure that medical research practices are sound and ethical, and that researchers work more closely with communities.
The road to Hell is paved with good intentions. Clinton’s intentions in the 1997 speech were fine, but his focus on racism, combined with an emphasis on the need for medical ethics training programs for physicians and scientists, inadvertently suggested that many modern medical researchers might be some kind of latter-day Josef Mengles. This isn’t an effective way to instill trust in medical research. Small wonder that conspiracy theories swirling around new medicines like Covid mRNA vaccines persist to this day.
Apologizing for the fact that the government lied to TSUS volunteers is good, as far as it goes - but the main thing the government should also apologize for is its failure to develop policies that would have enabled rural Alabamians to afford the lifesaving medicines they so desperately needed. Withholding medicine through economic deprivation was the central problem of TSUS. But it’s politically easier to call out racist researchers than it is to call out lackadaisical legislators.
So what does all this mean for the present day? It means modern clinical trials have a lot of trouble recruiting African Americans. And it means the clinical trials I’ve volunteered for usually take many years to clear regulatory authorities and the experience comes with huge amounts of ritualized security theater paperwork, because all clinical trials are assumed to be ripe for abuse until pre-proven innocent. My brother illustrates the fact that the elaborate security theater around clinical trials doesn’t always improve trust in the medical system - it sometimes sows doubt.
Later in 2021, the lost lesson of Tuskegee meant that when an over the counter LabCorp test showed my antibody responses against the initial two doses of the Covid mRNA vaccine were shockingly close to zero, I had trouble getting a just-in-case J&J booster dose. In my first visit to a pharmacy, I had my sleeve rolled up, the syringe was on the table, and when the technician asked, “have you received a Covid vaccination”, and I told the truth. The technician put on a faux-regretful face and told me that I couldn’t have the booster dose. I didn’t put up much of a fight because I didn’t think it would do any good to play the role of the angry Black man. But I was angry. Medicine was abusively withheld from me. I channeled the Laurence Fishburne character in Miss Evers’ Boys and scheduled a successful J&J boost at a different pharmacy later in the week. It might be nice to hear an official apology for the fact that I had to lie to a healthcare provider to get a lifesaving medical treatment.
Finally, the lost lesson of Tuskegee is tragically illustrated by the words “delay” and “deny,” which were engraved on the shell casings found at the murder scene of UnitedHealthcare CEO Brian Thompson. The killer was referring to the ongoing insurance industry practice of abusively withholding medical treatments. When healthcare companies robo-deny payments for life and death medicines like insulin, the industry is replicating the central abuse of TSUS on a far larger scale. The fact that these new disasters are suffused with less racism than before can hardly be considered progress. We have to learn the top-level lesson that withholding medical treatment is wrong and then resolve to stop doing it.
Full text: “The study, which was conducted without informed consent and withheld treatment, was shut down in 1972 after a federal panel deemed it unethical. The National Institutes of Health, in partnership with the Voices for Our Fathers Legacy Foundation, located a preserved collection of the panel’s documents held at NIH’s National Library of Medicine, which released them digitally to the public on October 19, 2023. Through broader awareness, NIH and VFOFLF hope to shine a light on the injustices dealt to the 625 men in the USPHS study, ensure this chapter in history is never repeated, and build greater trust in current biomedical research. On this 50th year of the enactment of the 1974 National Research Act, NIH dedicates this plaque to honor the memory of the men unethically treated in the study.”