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What comes to mind when you think of racist medical experimentation in the United States? For most people, it’s the infamous Tuskegee Syphilis study, during which doctors allowed Black men to die from syphilis in order to study “the natural progression of the disease,” even though effective treatment existed. In her book Medical Apartheid, medical journalist Harriet Washington argues that this is just one example in a long history of racism against Black people in medical research, and that we need to face this history if we are to build trust with Black communities.
We discuss key points from her book, starting in the age of chattel slavery in the United States up through Americans’ collaboration with South African apartheid doctors aiming to develop racially-targeted biological warfare.
This topic has implications for health communicators who are writing and designing for marginalized audiences. More broadly, awareness of this history is necessary to make sense of current health disparities by race, most recently made evident with COVID-19.
Sources and further reading
- Atomic veteran. (2022). In Wikipedia. https://en.wikipedia.org/w/index.php?title=Atomic_veteran&oldid=1064394377
- Carlson, E. B., & Gouge, C. (2021). Rural Health and Contextualizing Data. Journal of Business and Technical Communication, 35(1), 41–49. https://doi.org/10.1177/1050651920958502
- Doan, S. (2021). Misrepresenting COVID-19: Lying With Charts During the Second Golden Age of Data Design. Journal of Business and Technical Communication, 35(1), 73–79. https://doi.org/10.1177/1050651920958392
- Fantastic Fungi: A film by Louie Schwartzberg on Mycelial Connection. (2019). Fantastic Fungi. Retrieved February 15, 2022, from https://fantasticfungi.com/
- Garret, D. (2017, December 18). The Classic Hot Toddy Recipe. Wine Enthusiast. https://www.winemag.com/recipe/classic-hot-toddy-recipe/
- McElroy, S., & McElroy, J. (2013, Nov. 29). Headaches [Podcast Episode]. In Sawbones: A Marital Tour of Misguided Medicine. Maximum Fun. https://maximumfun.org/episodes/sawbones/sawbones-headaches/
- Saturday Night Live. (2021, April 4). Vaccine Game Show—SNL. https://www.youtube.com/watch?v=ocJCAfFQgCQ
- Washington, H. A. (2006). Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. Doubleday.
Transcript
| B | We are TC talk. |
| A | What will people say when they hear that I’m a tech comm freak? |
| B | What will people do when they find out it’s true? |
| A | I don’t know what overlap there is between technical communicators and former listeners of nineties Christian rock, but shout out to anyone who caught the reference. I’m Dr. Abigail Bakke. |
| B | And I am her partner, Benton Bakke. |
| A | We’re talking about tech comm. |
| B | Yes, we are. |
| A | That is, communicating about complex technical subjects to a range of audiences. I kind of see TC talk as meta tech comm because in a sense, it’s tech comm about tech comm, is it not? |
| B | Yes. Heaven forbid, someone should do a podcast about our podcast, which would be tech comm, about tech comm, about tech comm. |
| A | Benton, we are going to do that. I have it in my schedule. I want to eventually have an episode where we peel back the curtain so to speak and take listener questions about what goes into TC Talk. |
| B | As long as nobody pays attention to the man behind the curtain. |
| A | We are all behind curtains. |
| B | Curtains for you. |
| A | Literally. We are in a corner of our laundry room in a pillow fort of sorts. |
| B | Yes. |
| A | For sound dampening. A TC talk tradition. |
| B | Yes. |
| A | Tell me about what you’re drinking because I am not drinking it. |
| B | You are not drinking it, at least not yet. |
| A | I’m drinking coffee because I’m ready to go horizontal. Take a nap. |
| B | And I am drinking hot toddy for much the same reason. I am honestly drinking a hot toddy. Which, for the uninitiated is an ounce and a half of brandy. |
| A | Stop, stop. If you’re going to give the recipe of a hot toddy, you gotta do it your British accent. |
| B | Okay. |
| A | I don’t know. Is it British? Even if it’s not, a hot toddy is like the quintessential British sounding term. |
| B | This is technical communication. Begin by boiling five ounces of water, add to it 1.5 ounces of brady, half an ounce of lemon juice, and a tablespoon of honey. |
| A | Splendid. Thank you, Mr. Tumnus. I must go back through the wardrobe. |
| B | All right, off you go then. |
| A | We, last episode, talked about racism and technology. Martin Luther King Junior said in 1965, “Of all the forms of inequality, injustice in health is the most shocking and the most inhumane.” |
| B | Wow, I had no idea that he said that. |
| A | Yeah, that’s something he stood for that we don’t always hear about. |
| B | And MLK, he was looking at all the racial injustice. |
| A | So that’s saying something. Today the topic is racism in medicine, with a special focus on medical research and experimentation. This is going to be a doozy. |
| B | What could go wrong? |
| A | Probably goes without saying, blanket trigger warning. We’re going to be talking about some |
| B | pretty horrific shit. |
| A | But I’ll do my best to be vague. But I think that it needs to be talked about. As with most things, our history as a country informs where we stand today. |
| B | This country being the United States. |
| A | Yeah, we’re not in England anymore. |
| B | Well then, Cheerio. I’m sure that many listeners would think of Nazi Germany, medical experimentation, racism, Nazis, |
| A | Yes. But the Nazis learned from the US. They followed in our footsteps in a lot of ways. Let me ask you, when you think of American medical research and Black people, what comes to mind for you? |
| B | Now, I will admit upfront to being a white person, educated by white people. I did know that there was the, was it the Tuskegee airmen. No, that’s different. |
| A | You got the right university. |
| B | So I knew that there was a Tuskegee experiment done involving syphilis and Black men. And I knew that it was shady. |
| A | It’s interesting that you mention the Tuskegee airmen because how sad is it that that history has been tarnished by this association? |
| B | Yeah. |
| A | We will talk about the syphilis study. But I want to tell you the, the book that we are largely going to draw from, |
| B | yes. |
| A | It’s called Medical Apartheid, The Dark History of Medical Experimentation on Black Americans from Colonial times to the present. By Harriet Washington. She’s a medical writer and it was published in 2006. Her big argument is that there is a gap in our knowledge of medical history and abuse towards Black people. And that for many people, the syphilis study is sort of the one key event that stands out in our minds. That was true for you. That was also true of me., And it’s something that I have taught about in research methods courses, for instance, when talking about research ethics. |
| B | Okay. |
| A | Her point is that by pointing to this single instance, that is in the past, it can lull us into thinking that it’s not a problem now or had not been a problem prior. I’m going to touch on just a few examples from the book. So this will not be a comprehensive history at all. I do recommend reading the full book because there is something about just chapter after chapter of these densely documented atrocities that I think people need to experience and come to terms with that. And I will say that the kinds of studies that are going on now are way different than, |
| B | than what’s in that book then, oh yes. |
| A | So I don’t want anyone to come away from our conversation thinking, never participate in a clinical trial. That is not the message. Her message is, we need people of all racial backgrounds to participate in clinical trials. But denying the very real abusive history is only going to deepen the mistrust that’s already legitimately there. |
| B | Right. |
| A | What do you see as the relationship between medical treatments and medical research? |
| B | Well, medical research would be for developing medical treatments. |
| A | Yeah. I haven’t always thought of those two as interrelated. I’m mostly involved in the world of being a healthcare consumer and a very privileged one at that, to have access to vetted and effective treatments. And I haven’t always thought of what it takes to get there. And now we know clinical trials are the gold standard for determining whether a treatment is effective. But the carefully designed clinical trials of today are a far cry from say, the days of slavery. If a human being has no moral qualms with owning another human being for the purposes of manual labor, they’re not going have any qualms about using those human beings to satisfy their curiosity about what happens to a human body when you do this to it. |
| B | Oh boy. Wow. |
| A | Many doctors at the time made a living caring for enslaved people. And by caring for, I mean, |
| B | making sure they were healthy enough to work. |
| A | Yes, because the slave holders’ interests came first. There were doctors who were inventing diagnoses specifically for enslaved people. |
| B | Oh boy. |
| A | Whose, quote, “principal symptoms seemed to be a lack of enthusiasm for slavery. Escape might have seemed normal behavior for a slave in ancient Greece or Rome. But Dr. Cartwright medically condemned such behavior in American Blacks, offering a diagnosis of, drapetomania from the Greek words for flight and insanity.” |
| B | Ugh. |
| A | Or they had special diagnoses for malingering. Because the belief was that Black people had no inherent work ethic unless prodded to. And so sometimes the physicians would prescribe a whipping or more manual labor. And that speaks to a belief that people really worked hard to invent and hold onto is this belief that Africans were uniquely designed for manual labor in subtropical climates. And therefore, it’s doing them a favor to enslave them. |
| B | So I’ve got a question here. Were there like schools where people in the doctor track would learn like, how to treat people as property? |
| A | It just went without saying. It was so embedded in the culture of the time. |
| B | Oh, okay. So it wasn’t indoctrinated in a professional sense. It was just breathing the same air. |
| A | Exactly. She writes, “doctors also bought and hired slaves on whom to conduct experiments too painful, too risky, or otherwise too objectionable, to inflict upon whites.” Most benignly, this entailed things like experimenting with dosages of common treatments at the time in ways that they wouldn’t do on their white patients. And these weren’t even experiments designed to lead to useful medical knowledge, necessarily. A lot of times it was just ad hoc, trial and error. |
| B | This was definitely in the realm of medicine as a practice, not a science. |
| A | Yes. And it’s important to understand just how shitty and unhelpful medicine was in general at that time. I should say, Western medicine, up until about the mid 1800s when they started to learn about germ theory. But before that, many ascribed to the theory of the humors, the four humors. Have you heard that? |
| B | I bet it’s going to be funny. |
| A | Anyway, the general idea is that our bodies are composed of four vital fluids, blood, bile, phlegm, and they need to be in balance. So if someone is sick, the answer must be causing a violent expulsion of a bodily fluid, whether it be vomiting, shitting, blood letting. And so they would give people arsenic and mercury. And when the people get sicker, ah, mission accomplished. And I’m going to insert a little plug here for the Sawbones podcast because they talk about medical history and that’s where I’ve learned a lot of this about how bad doctors were historically. Also, somebody recommended that podcast to me after we had started TC Talk. And it’s a husband and wife pair. The wife is a medical doctor. The husband not a medical doctor. And so I was like, Oh, we’re kind of doing a similar setup. Yesterday, I listened to their episode about headaches and learned that if I wanted to try an old folk remedy, I could strap a dead mole around my head or a live frog. |
| B | But never the twain shall meet? |
| A | I suppose you could do them both if you want to like double your chances of success. |
| B | Oh boy. |
| A | Or you could just tie a snake around your head. I don’t know if the snake needs to be alive or not. Ooh, get this. Strap a dead mole and a live frog around your head with a snake. |
| B | Now you’re talking. That is next level right there. |
| A | Yeah. Give it a listen. It’s a good time. Back to colonial times in the United States. |
| B | Very good then. |
| A | In other cases, physicians would practice surgery on unanesthetized slaves. This was even after ether was invented. Because they insisted that Black people didn’t feel pain like whites did. This is a misconception that persists today. Some doctors, they’ve done surveys. Some doctors still believe that Black people don’t feel as much pain. And even if a medical professional won’t come out and say they believe this, it’s reflected in the research that shows that people of color and women are much less likely to have their pain taken seriously. |
| B | I wonder if nowadays that it’s a racist assumption about physiology of people with black skin or a racist assumption about racial tendencies to be seeking powerful painkillers. I wonder what kind of racism it is. |
| A | Yeah. Back to 18 hundreds. Doctors and slave holders and the Southern elite at the time were obsessed with proving that black bodies are inherently biologically different from whites and of course inferior. And there’s no scientific basis for this belief. But of course they couched it in scientific terms, right? But you can see the political reasoning for such a belief. It allowed them to continue to justify slavery. Washington writes, “interestingly, the contradiction of the Black slave as both quote, riddled with imperfections from head to toe. And a hearty laborer who was impervious to most illnesses and pain, I would add, escaped the scientific racists.” Like it was so thoroughly illogical, not to mention deeply inhumane. |
| B | Wow. |
| A | And if these doctors sincerely believed that Black people were so different as to be able to be classed as a different species, then why did they feel safe generalizing the results of their experimentation to white people? |
| B | They really went that far? |
| A | Some of them did, yes. |
| B | Oh boy. That is some hard delusion right there. |
| A | Okay. Medicine started to professionalize in the 1800s. Medical schools started cropping up all over the country. And to stay competitive, they needed a constant supply of quote, clinical material. Take a wild guess what that’s referring to? |
| B | Material? Referring to human lives as material. |
| A | Yes. |
| B | Wow. |
| A | And so this came in a couple of forms. First is that poor people kind of exchanged their autonomy and dignity for any kind of medical treatment, right? Because it was very inaccessible to them. And, and so it was viewed as payment in a sense, you pay for your medical treatment by allowing yourself to be subjected to medical research, |
| B | Geez. |
| A | Or allowing students to practice something on them. And this could include things like amputations that were not warranted. This was all kind of driven by the expectation to publish in medical journals or, maybe not expectation, but doctors wanted credit for new discoveries or new procedures. |
| B | So this kinda takes publish or perish and says, why not both? |
| A | I publish, you perish. |
| B | Oof. That sounds like a dying field. |
| A | The other thing is that to this day, medical students always take an anatomy lab and you need bodies for that. You know, there was demand for thousands of bodies for medical students to dissect. Where do you think these bodies came from? |
| B | Lots and lots of people who donated their bodies to science. Unwillingly. |
| A | Well, grave robbers. |
| B | Oh. |
| A | So it started with largely Black cemeteries, but when it started affecting white people, it |
| B | Became a problem. |
| A | got some attention, yeah. And the people who did the grave robbing were known as resurrection men. How creepy is that? |
| B | Ew. |
| A | We’re leading up to the Civil War by now. And quote, “international opposition to slavery had made it an institution truly peculiar to the US. The medical rationale for slavery, that inferior and feeble Blacks were simply unable to govern and care for themselves, was derided as insular and self-serving and counted few active sympathizers outside the South.” Along comes the census of 1840. |
| B | Oh boy. |
| A | So what this census revealed was that “free Blacks suffered far worse health than did enslaved Blacks who enjoyed low rates of disease. These data bolstered pro-slavery arguments by providing copious statistical, quote, proof that slavery was essential. The document seemed the very model of objectivity, offering dense, orderly rows and columns of numbers.” How can numbers be biased? Well, some doctor was at home sick with a broken leg and for fun decided to dig into this and found many flaws in the methodology, plus just outright fabrications. One of the problems in how the numbers were collected is that the census takers would go to the slave owners for the data. |
| B | What could go wrong there? |
| A | And so they would take their word for it if they said No, all of my slaves are healthy. This census was ultimately debunked, but the damage had been done and it likely delayed emancipation. And I wanted to bring this up because I think it’s a good example for Technical Communication students in particular of how statistics are not free of bias, right? |
| B | Really. |
| A | There’s a tendency to view numbers as irrefutable. So after the Civil War, things got all better, right? |
| B | Well, yeah. |
| A | And here I’ll skip to the syphilis study. So first, this was in part another effort to prove that syphilis was a distinctly Black disease, even though it was not. So the participants in the studies were men with syphilis, and the researchers promised treatment in exchange for joining the study. |
| B | Okay. |
| A | Started in 1932. It was a longitudinal study, ended in 1972, so followed these men for decades. And this was sponsored by the US Department of Public Health. |
| B | Oh. Okay. |
| A | One of the doctors on the study suggested that “they save the expense of treatment by merely observing the course of the disease in Blacks and publishing the data” writes Washington. Treatment for syphilis existed at the time. |
| B | Wow. |
| A | So this is a clear case where the research had no therapeutic value whatsoever. |
| B | Like how did we not even, like at 1932 how did we not already know how the disease progresses? |
| A | Well, they knew, but they didn’t know quite as precisely as they wanted to know. But this way, they could give the men spinal taps every so often and do other testing |
| B | Under the guise of treatment. |
| A | Yes. And I say this not because I think that was a worthy course of study in any way, shape, or form. But that was the justification. Contrary to popular belief, they did not inject men with syphilis. They deliberately withheld treatment, which sounds like kind of a pass, like still atrocious, but more passive than active. |
| B | It was a sin of omission. |
| A | But here’s what I did not realize. They were actively preventing these men from getting treatment anywhere else. They monitored these men very closely for years to the point of giving their names to local clinics, to military physicians. So if they went into the military, they wouldn’t get the treatment. |
| B | So the military was in on it too. |
| A | Yeah. We have outright lies. We have lack of care for human lives. We have a cover up of the evidence of the study. So it is no surprise that this has become so iconic even in pop culture, I would say. Do you remember that SNL skit we watched a while back, It was a game show. Will you get the vaccine? The game show host is Dr. who is begging his family to take the COVID vaccine, offering 500, 1000 than a $100 thousand |
| B | I don’t remember that one. |
| A | to get them to take the vaccine. Well, let’s watch it. “That sounds means it’s time for ask a doctor, this is where each of you get to ask me, a medical doctor any questions you have about the COVID vaccine, and in the end hopefully someone will leave here with cash and take the vaccine. Let’s start the clock at all day. Tasha. Do it got syphilis in it? Of course not. Why would it have syphilis in it? Tasha. Tuskegee. Okay. But that was a long time ago. I ain’t forget. It doesn’t have syphilis in it. Don? Well I’ll take it when white people start taking it. White people are taking it. Man, you can’t trust white people. Why can’t you trust white people? Tasha. Tuskegee. Okay you’re not wrong. You’re not wrong. About Tuskegee. But still.” I don’t know, what do you think is the message of that? |
| B | On one hand, it seems to be kind of making fun of the fact that because of what happened with syphilis there, It’s a reason that people don’t trust the vaccine. |
| A | Yeah, it’s minimizing of that. |
| B | But it also, the doctor does say that’s fair. |
| A | Yeah, “you’re not wrong.” So number one, if they really wanted to target vaccine hesitant groups, they would have done this gameshow with white evangelical Christians. Can, it seems to be in line with what Washington says about encapsulating Blacks’ distrust of the medical system into this single syphilis study example, which while a legitimate reason to be suspicious, is just one example in a long-standing pattern. |
| B | It’s probably achieved that status by being ended in 1973, still in public memory. And I’m sure that when it came out, people were furious about it and would, it’s going to live on in the public memory for a long time. |
| A | Wait till I get to some of the stuff that doctors were doing as late as the nineties. And this book only goes up to 2006. And I don’t want to imply that any one should not get the vaccine. Like that is in no way where I’m going with this. What I’m saying is that as sort of a microcosm of how the medical establishment reacts to the African-American community. It’s almost like, “they can’t get over this, this one thing from the past. And so it’s not worth it to try to reach them.” Right? |
| B | “Come on. It was just that one time that I made sure you didn’t get any safe treatment for this completely curable disease.” |
| A | Yeah. And so what Washington would say is, we need to be upfront about not just Tuskegee, but the whole history. That is a prerequisite for building trust and it needs to happen. And the burden should fall on public health, the medical system, white people, the ones who have historically done the harm. |
| B | Yeah. |
| A | Let’s skip ahead to World War Two. |
| B | Great times. |
| A | Or I should say, after World War II, the Nuremberg trials. What can you tell us about that? |
| B | The phrase “crimes against humanity” was first created or first broadly used. It was used as a device to say that even though we have zero legal jurisdiction over your territory, we, the victors of World War two are going to take and apply this international law to your territory. And they put them on trial. The typically Nazi people in charge, in Nuremberg. |
| A | And what was the outcome? |
| B | They locked up some Nazis. |
| A | They even executed some. |
| B | They did? Oh. |
| A | The Nuremberg Code arose out of this, which is a set of guidelines for doing research with human participants. |
| B | Oh, I didn’t know that. |
| A | Yeah. So this is the foundation of institutional review boards today in a lot of ways. Yeah, so those were adopted in 1947. But American researchers didn’t think it should apply to them because they were the good guys. |
| B | American exceptionalism. |
| A | Right. They thought, this is quoting ethicist Jay Katz “It was a good code for barbarians, but, but not necessary code for ordinary physicians.” So the Nuremberg code had no teeth, basically. |
| B | It was kind of a code of conduct. It wasn’t a law though. |
| A | Right. Have you ever heard of Operation Paperclip? |
| B | Yes. The United States took Wernher Von Braun from his Peenemunde facility in Nazi Germany. This is where Nazis developed the V1 rocket. Of course, not only the man, but also a lot of his staff, the people with the technical skills, their families, of course, because, you know, even scientists like to have a family. So we made an effort to get them to surrender to us instead of to the Soviets who were much closer to Peenemunde. |
| A | Yes. So the United States brought over hundreds of German scientists and engineers, many of them Nazis, even high-ranking leaders in the Nazi party. |
| B | So was Paperclip only focused on Von Braun and his team? |
| A | No, no. They brought over medical researchers. Other, a wide range of scientists. And the idea here is to use their expertise to give the U.S. an advantage in the Cold War. |
| B | Yep. |
| A | Do we talk about World War Two a lot on this podcast? It seems like it to me. |
| B | I don’t know. You know what we don’t talk about much on this podcast? The war to end all wars. World War One. That’s what they called it. And then 30 years later they’re like, Oh, that’s embarrassing. |
| A | Do we need more diversity in our war coverage? |
| B | I don’t know. We could just cover it all with a blanket statement of this is bad. |
| A | One of the scientists they brought over did radiation experiments on unsuspecting humans, a group of cancer patients, he tried out total body irradiation. |
| B | Bigger hammer, huh? |
| A | Was that meaningful blinking right there? |
| B | Yes. That was me. Oh, sorry. Sorry you can’t hear my blinking. |
| A | Imagine the blinking man meme right now. That’s Benton. |
| B | Yes. That is me. |
| A | From what you know about radiation, what is that going to do to somebody? |
| B | Well, the entire point of irradiation is to kill cells. The modern, |
| A | You focus on the cancer, not the whole person. |
| B | The contemporary, the idea is that you have several different beams of radiation that focus on the tumor so that you’re not exposing benign tissue, good parts of the body, to lethal doses of radiation, that you get it focused so that it all intersects on that tumor and it gets a lethal dose. |
| A | And you’d think by this time, they would have had enough circumstantial data to know that that is not a good thing to do to a body. But it might be helpful information if you are anticipating nuclear war. |
| B | Yes. There’s that. |
| A | Yeah. So 30 people, |
| B | Before Operation Paperclip, yes, we had a few harrowing and absolutely ghastly accidents at Los Alamos where they were developing the very first nuclear bomb. So my grandpa, he’s passed away now, but not, not from it. He was an atomic vet, meaning he was a physical witness of an atom bomb test. He told me a story about when they were telling him that when it’s going to go off, you need to close your eyes and put your arm in front of your eyes. And when it went off, he said, he could see right through his arm with his eyes closed. He could see that bomb, which I mean, with an experience like that, how can anyone think this is a, you know, we gotta do this more. Let’s see what happens if we do it again and again and again. |
| A | Ugh. It’s like it’s not enough to just know that this will kill you. You have to calibrate the exact dosages and the exact type of, like, some people were literally injected with plutonium without their consent. |
| B | Shit. |
| A | The justification being, oh, they’re going to die anyway. Even people who are terminally ill deserve rights, right? But you can see how racism and other forms of discrimination come into play here when the doctor can make the call of whether this patient is moribund enough to experiment on. Okay, moving forward |
| B | in time, |
| A | we’re learning more about genetics and the desire to prove this inherent biological distinction between Blacks and whites continued, this time with a genetic emphasis |
| B | a new scientific tool to apply racism with. |
| A | A lot of research funding went to trying to study aggression or violence in Black boys and trying to locate some genetic link to that. |
| B | Just wow. Huh, that’s strange. “I mean, we enslaved your ancestors for hundreds of years. There’s no way we’re going to give you any social mobility. Why are you so angry?” |
| A | And not even that. They weren’t even necessarily angry. Like so much of this has to do with stereotypes, right? And one of the researchers justified the study by citing the Columbine shootings and saying we really need to study young male aggression. |
| B | Ugh. |
| A | Ugh. Even though, school shooters in the United States, the majority |
| B | White. |
| A | have been white boys? They would coerce parents into allowing research on their children. And so they would give them dangerous medications. Somebody did fucking lobotomies on Black boys. Like they were doing fucking brain surgery on some of these boys, children. Again, the political benefit of proving this inherent difference is that if you can blame the victim, then you don’t need to invest in better living conditions, better education, housing, nutrition, social support. That’s not to say that there aren’t genetic differences as far as diseases go. Can you think of any that are unique to Black people, or thought to be. |
| B | I know that there’s some connection between sickle cell anemia and Black people, but I honestly have no idea any more than just that. |
| A | Okay. And most people don’t, right? So it’s thought of as a quote, unquote, Black disease. And yes, Black people are more likely to have it. But race is not the common denominator. |
| B | What is? |
| A | It Is proximity to the malaria bearing mosquito. So people |
| B | Geography. |
| A | Yes. So people who live where there is malaria are more likely to have sickle cell disease. South America, Cuba, Saudi Arabia, Greece. And in fact, if you have malaria, having sickle cell can be an advantage for you, |
| B | Huh. |
| A | But my point is that even in cases where we are pretty sure that there is a genetic difference, it’s not that simple. And less than 0.5% of Black deaths can be attributed to genetic differences. Which is certainly worthy of study, yes. But it is not proportional to the amount of research that has been done on it, if that makes sense. People are researching it more than it deserves, you know, given that it is only 0.5% of Black deaths that are attributed to genetic differences |
| B | Okay. So it’s, it’s one of those things where our fear or curiosity completely has no, no bearing on actual threats like terrorism versus deer. Deer kill way more Americans than terrorists do. But we’re not afraid of deer. I mean, they, they look so dopey. |
| A | No, they’re cute. Come on. |
| B | They are cute. |
| A | I’m going to stop here in my history. I could go on. I was planning to talk about South Africa and Apartheid. I’ll just give you a super quick summary. So in apartheid South Africa, the government was interested in developing chemical and biological warfare that could be targeted to Black people. So they were working on that, |
| B | Fun fact. They also at one point gave a go at developing nuclear weaponry technology. |
| A | And this sounds atrocious. Yes. And it is. I want to highlight the point that the South African doctors could not have accomplished what they did without the support, without the expertise of American scientists who were conducting their own biological warfare tests against their own people. Did you know that? |
| B | Americans? |
| A | The Army and the CIA released thousands of mosquitoes in Black neighborhoods to test whether this would be an effective delivery mechanism for yellow fever or other diseases that they could then use against their enemies. |
| B | Just when I didn’t think the CIA could surprise me. Wow. |
| A | Of course it was majorly covered up. Okay. Her conclusions. What I’ve said already, the point is not that medical research is untrustworthy today. The point is that mistrust of medical experimentation today is warranted and needs to be acknowledged and addressed and not dismissed or minimized. So frame the problem, not as Black Americans’ aversion to medical research, frame the problem as the untrustworthiness of American medical research. And finally, she says that even though standards are much higher in the United States, we have IRBs which are flawed, but they’re not nothing, and other regulations, a lot of this research is now being exported to Africa because you have, in most cases, a poor population that may be desperate for medical care. And the cost of receiving that care is allowing medical experimentation. So the fight is not over. Never underestimate the depths of human depravity. |
| B | I’m, I’m pretty pessimistic and I know I do. |
| A | You underestimate? |
| B | I underestimate, yes. |
| A | Let’s get to applications for Technical Communication, health and medical writing. |
| B | Okay. |
| A | And people involved in medical research. And don’t come at me with hashtag Not all doctors. Because I know there are and have been many wonderful, humane, caring physicians throughout history. My point is that. What is my point? |
| B | One bad apple makes you question the whole barrel. |
| A | But we can’t look at this as a matter of some individuals being better people than others. You know, “there’s good doctors and there’s evil doctors.” It’s not that simple. Because as you can see, so much of this has paralleled societal beliefs and values, political expediencies, systems. It’s something that needs to be looked at systemically and not turn a blind eye to it. |
| B | Or a double blind eye for that matter. |
| A | What’s a double-blind eye? Oh my goodness! Double-blind trials. Double-blind peer review, is a staple of good science. That’s the joke. |
| B | Yes. |
| A | So my message would be similar to, in our last episode when we were talking about how the default is discrimination. And so if you are in the field of medical writing, then you need to be intentional about making your writing explicitly anti-racist. Involve people from the group that you’re trying to reach. And don’t exclude groups that need information just because they may be mistrustful or hard to reach, or because building trust and understanding their cultural values is difficult. Right now, informed consent is the cornerstone of ethical research. But informed consent means that people need to be informed of potential benefits, risks. That is where medical writers can come in, doing that education, not just about whatever it is being studied, but about the research process itself. I think the more people understand how research is done and why it’s essential and what their role is in it, the more they may be open to it. |
| B | Okay. |
| A | When I was talking about making your writing explicitly anti-racist, I want to bring up a couple more recent examples from COVID. |
| B | Okay. |
| A | This comes from a couple articles published in a special issue of the Journal of Technical Writing and Communication on COVID and tech comm. And there are two that I want to point out that are relevant here. Carlson and Gouge wrote an article about COVID infographics pertaining to a rural community in West Virginia. Because early in the pandemic, a lot of the data was coming out of the big cities, right? Which has different makeup, different needs from rural communities. And they talked about, yes, infographics are valuable, but the ones in question were not breaking it down by race. So it was kind of covering over the fact that just under 4% of the population was Black. But Black people made up more than half of the positive cases at the time that the infographic was published. They say quote, “to make visible these inequities and support the affected populations, technical and professional communication professionals might consider how to contextualize data-driven accounts of COVID-19 in order to call attention to the under-represented concerns of rural communities and support rural community members who are multiply marginalized, and thus especially vulnerable in times of crisis.” Another article, this one by Doan, she’s talking about COVID data visualization. And kind of similar argument here. How, quote, “reducing COVID-19 fatalities to arguably emotionless pie charts ignores the virus’s long-term impact on survivors.” So, long COVID. Not including enough data can cause viewers to misinterpret the visualizations because ‘a chart only shows what it shows and nothing else.’ Drawing there from Cairo. So her advice is, do not minimize fatal instances of disease. Acknowledge the long-term effects on people, especially from systemic racism. So the, the visualization she’s talking about, she’s saying doesn’t account for things like the disproportionate impact on Black and Native American people. And other data points that need to be acknowledged if we’re going to solve problems for those populations. All right, This has been a dark topic. Let’s close with a little bit more levity. I had noticed when working on our last couple of episodes that you like to talk about mushrooms. |
| B | Yes, I do. |
| A | So maybe let’s conclude with a new segment I’d like to call Fun with Fungus. |
| B | That’s good. |
| A | Ooh, you could be the fun guy. |
| B | I am a fun guy. |
| A | Talking about your fungus facts. |
| B | Funky fungi. |
| A | I laughed at you when you said there’s so much we don’t know about mushrooms. But guess what? There is so much we don’t know about mushrooms. |
| B | That’s right. I was right. |
| A | We found a documentary about it. And again, jokingly, I was like, haha, let’s watch this. My mind is blown. What is one of the things we learned? |
| B | Fungus can eat oil spill residue and turn it into a thriving, healthy ecosystem. |
| A | So the mushroom, that’s just the part you see on the surface, but below the surface, they’ve got mycelium, which is this complex interconnected web, |
| B | very small, hair-like, |
| A | that allows for communication between trees, |
| B | which is wild. |
| A | Like, how is this even real? Actually, I looked up the documentary because I was like, Is this for real? And you know how Google gives you those other people also asked, |
| B | Yeah? |
| A | One of them was, Is this this movie for real? And I felt validated. I am still skeptical. I don’t know if I believe that magic mushrooms are responsible for accelerated human evolution. |
| B | That is the stoned ape theory. |
| A | The stoned ape theory. Yes. Well, they’re stoning, or not stoning, getting, getting people pleasantly high on shrooms as part of palliative care and |
| B | treating anxiety and depression. |
| A | Yeah. Get me into that clinical trial. |
| B | Yeah. |
| A | All right. Thanks Benton for sitting through this and offering shocked and dismayed facial expressions at appropriate points. |
| B | Well, you’re welcome. |