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“The Tuskegee Syphilis Study is widely acknowledged as a violation of ethics today, but the social conditions of the time allowed the grave injustices to happen in plain sight. In the 1930s, social Darwinism emerged as justification for racist practices. The perceived inevitability of African Americans’ natural “extinction” was used to justify many unethical practices within the study, including the decision to withhold known treatment from participants. The USPHS earned the approval of the United States government after making the case that African Americans would not seek out treatment of their own volition, a harmful preconception linked to the theory of social Darwinism.”
Bintou Diarra is a premedical student.
She shares her story and discusses her KevinMD article, “COVID-19 and the Tuskegee syphilis study.”
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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.
Transcript
Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we have Bintou Diarra. She is a premedical student, and she wrote the KevinMD article “COVID-19 and the Tuskegee syphilis study.” Bintou, welcome to the show.
Bintou Diarra: Thank you.
Kevin Pho: We’ll get into your article in a little bit, but first off, can you share your story and journey to where you are today?
Bintou Diarra: I’m Bintou. I’m a junior at Brown. I’m from the Bronx, New York, so Providence is a long way from here. I’m concentrating in medical anthropology, which I like to think of as public health’s more theoretical sister. That’s kind of how I make sense of medical anthropology. So I’m constantly just thinking about bioethical issues.
I actually came into Brown, funny enough, thinking that I was going to concentrate in English and health and human biology, because I thought that with those two things, I would somehow find my niche. I realized that I love reading, love writing, love literature, and love science, but I don’t like writing about literature. I feel very limited in writing about literature. So when I took two classes in medical anthropology freshman year, I was like, “This is my niche.” I like writing about contemporary issues. I like considering the nuances that we can add to discussions about contemporary issues, and that’s kind of what I liked about writing the article that I submitted.
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Kevin Pho: As a premedical student, tell me some of the challenges you face as you progress on your medical school journey.
Bintou Diarra: Content, definitely, but that’s a challenge for everyone. I think trying to weave in personal values is especially hard. I think there’s a lot of institutional inertia in academia, so things are very slow to change. But they are changing, so I’m kind of optimistic. But I think that’s hard: finding spaces where, again, you can add nuance to conversations without it being shoved into this box.
Not to go too much into the article, because I know we’ll talk about that eventually, but I think we have an image of what something is. So what’s seen as a public health threat, or an anti-vaxxer, is the people that march to the White House, and not everyone that’s vaccine-hesitant is that. So I think finding the space to weave in your personal interests and add nuance to discussions without it being written off as going against our shared goals has definitely been difficult. But I like that it’s difficult, because it forces me to approach conversations with care and approach other people’s perspectives with care.
Kevin Pho: All right, so let’s talk more about the article that you wrote on KevinMD. It’s titled “COVID-19 and the Tuskegee syphilis study.” Now, for those who didn’t get a chance to read your article, can you just walk my audience through it and share the story of why you decided to write it?
Bintou Diarra: It actually started out as an assignment for a class at Brown. We had to write an op-ed on any unit that we covered, and I was just fascinated by the unit on the Tuskegee syphilis study. I learned about it in high school, but upon revisiting it, I realized that there were so many missing pieces that you could easily dismiss as the little things, but they completely change your perspective on the issue. Even just knowing of the longevity, right? I didn’t realize that the Tuskegee syphilis study was longitudinal in nature. I thought it was just this one-time instance, and that was it. I also didn’t know of the views that informed the way people approached the study. So when I learned about it the second time, I was like, “Wow, this is just illuminating, and it speaks to so many issues that we talk about in bioethics.” So I was like, “Let me write about this.”
I think this is constantly mentioned when it comes to this contemporary issue of COVID, right? When we interrogate Black Americans’ decisions to not get vaccinated, the Tuskegee syphilis study is commonly mentioned. I’m a firm believer that any counterargument is only going to be as nuanced as the original argument to which it responds. So it’s the constant, “Oh, Black Americans aren’t getting vaccinated because of Tuskegee,” and then the response becomes, “Well, Tuskegee was about withholding treatment, so when you get vaccinated, you’re exercising your agency to get treatment.” And I’m like, that’s a great counterargument to the original argument, but because the original argument, in my opinion, lacks so much nuance, you can’t really talk about it beyond that. So the goal in writing that was just to add the nuance that was pretty much made clear to me during that unit.
I submitted the assignment. My professor, Lundy Braun, really, really, really loved it. She was like, “You need to edit this and submit it. I think KevinMD would be the perfect platform.” So I did some reading on your platform, and I was like, “I like this. I like that it’s willing to grapple with so many things that we talk about in passing.” So I submitted it, and here we are.
Kevin Pho: For those listeners who don’t have a deeper understanding or knowledge of the Tuskegee syphilis study, can you just briefly describe it? And then I also want you to talk about some of these nuances that you discovered as you were researching this paper.
Bintou Diarra: The Tuskegee syphilis study was a study in Tuskegee that aimed to pretty much understand the course, the natural course, of untreated syphilis in human beings. So they conducted the study. Well, initially, they informed people that they just had “bad blood,” which is pretty much a term that could have meant anything to the population that they were studying, because it covered such a wide range of illnesses. They pretty much chose to participate under the impression that they would receive treatment when it became available. But unfortunately, in order to meet the goal of observing the course of untreated syphilis, the researchers chose to withhold treatment even as it became widely available. So that speaks to one of the most unethical parts of the study.
The nuances that were illuminated during that unit were that, one, they withheld the treatment, and two, it wasn’t viewed as this grave human rights violation around the time that it occurred. I think that’s the biggest thing, right? We constantly cite the Tuskegee syphilis study today, and we think, “Oh, well, this is wrong, obviously wrong.” That’s just unequivocally true. But during the time that it was happening, we weren’t aware that it was this grave human rights violation, and that’s the reason why it went on for 50 years.
So when we think about the nuances, it’s really important to interrogate that. Why did this go on for five decades, right? Why did this go on in such a public sphere? It wasn’t anything that researchers were trying to be secretive about. It wasn’t something where they thought, “Oh, let me just hide it from the public view.” No, it was actually widely accepted and embraced by the public.
So that begs a lot of questions about what was illuminated to me in the research: looking up how much even the ideas surrounding the study, and the reason to carry it out, were rooted in the idea of social Darwinism, the idea that certain populations are not likely to seek out treatment anyways, and the natural confirmation bias that sometimes informs biomedical research, that you do research not necessarily to seek out answers, but you go in with your answer in mind and then you find evidence that supports the answer. So it just revealed a lot of deeply ingrained issues that inform the historical legacies that we see today.
Kevin Pho: So I’ve read a lot of articles about how Black Americans are a little bit apprehensive about the COVID vaccines, and the Tuskegee syphilis study is often cited, as you said before, as a potential reason why. So I was wondering, given your reflection on the nuances of the Tuskegee study, can you comment on that connection that’s often cited in the media about the apprehension about the COVID vaccines and the Tuskegee study?
Bintou Diarra: I just think it’s an issue of great nuance. I think to increase vaccination rates in general, we have to first take steps toward what Dr. Gawande, who I love to read, talks about: embracing curiosity, and what curiosity and empathy actually mean. I think in order to empathize with these historically disenfranchised groups, we have to choose to embrace what we don’t know, right? We have to embrace what has been hidden. We have to really grapple with what’s supposed to be, and oftentimes is, a very helpful field; we have to grapple with the harmful histories.
I think the linkage of the Tuskegee syphilis study and Black Americans’ decisions to get vaccinated or not is super important, and it just calls for conversation about what informs attitudes about vaccination. I think our first step there, though, is not conflating every single person that has a question about vaccination with an anti-vaxxer, when there are actually a lot of vaccine-hesitant people around us. I’d argue that those people can be swayed in the right direction, but in order to sway people in the right direction, we have to rely on acknowledging, again, these historical legacies that have shaped the medical establishment in order to first affirm that community mistrust, and then we can move forward in pushing people to do what we see as the right thing.
Kevin Pho: We’re talking to Bintou Diarra. She is a premedical student, and she wrote the KevinMD article “COVID-19 and the Tuskegee syphilis study.” Bintou, as we reflect on the study, what are some misconceptions that you want to clear up about the Tuskegee syphilis study?
Bintou Diarra: Well, the first and main misconception surrounds the longevity of the study. The idea that it was just one medical experiment that took the course of a few days or a few months is the first one I’d like to clear up, and I think the main one, actually, because understanding that the study took decades allows you to dig deeper, right? Why is it taking decades?
Another misconception I personally would like to clear up is the idea that it was accepted as this grave human rights violation around the time that it was carried out. We might understand it as this grave human rights violation now that we’re looking back, because I think it’s easy in our engagement with things like that retrospectively. But at the time that it was happening, it wasn’t acknowledged as a human rights violation or as something that was wrong. It was just simply something that was being done for the greater good. I think those are the two main ones that I would like to comment on.
Kevin Pho: My final question: What are some of your take-home messages that you want to leave with the KevinMD audience?
Bintou Diarra: Just that every single thing that the medical establishment has contributed to, whether intentionally or inadvertently, requires constant evaluation and analysis. Yeah, I think that’s the main thing.
Kevin Pho: Bintou, thank you so much for sharing your time and insight, and thanks again for being on the show.
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