You're Wrong About - Tuskegee Syphilis Study Part 1: The Lie

Episode Date: September 8, 2020

Mike tells Sarah about the longest "non-therapeutic" experiment in medical history. Digressions include deep fried ice cream, Kato Kaelin and a hot-yoga cabinet. As a warning, this episode c...ontains long quotes from eugenic memos and detailed descriptions of medical racism. We promise to do a happier episode soon. Huge thanks to Susan Reverby, Vanessa Northington Gamble and Lillian Head for helping Mike with the research for this episode! Support us:Subscribe on PatreonDonate on PaypalBuy cute merchLinks!Under the Shadow of Tuskegee: African Americans and Health CareExamining Tuskegee: The Infamous Syphilis Study and Its LegacyBad Blood: The Tuskegee Syphilis ExperimentMedical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the PresentThe Tuskegee Syphilis Study: Medical Research versus Human RightsRethinking the Tuskegee Syphilis Study: Nurse Rivers, Silence and the Meaning of Treatment“There Wasn't a Lot of Comforts in Those Days:” African Americans, Public Health, and the 1918 Influenza EpidemicThe Study Of Untreated Syphilis In The Negro MaleNurse Eunice Rivers: Marching to Doctor's Orders in the Tuskegee Syphilis Study in the Jim Crow SouthRacism and Research: The Case of the Tuskegee Syphilis StudyThe Tuskegee Syphilis Experiment: Medical Ethics, Constitutionalism, and Property in the BodyThe Tuskegee Syphilis Experiment: Biotechnology And The Administrative StateSupport the show

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Starting point is 00:00:00 So, yeah, the Tuskegee syphilis experiment, really the only word that applies is syphilis. Welcome to your wrong about where it's just a little bit of history repeating. That's very good. Thank you. Because it's true and it's a reference to a lovely song. A Shirley Bassey song. Which I'm sure is stuck in your head now and if you have to take a break and listen to it and come back, like please do that, okay?
Starting point is 00:00:34 This is where you do that. Can we stop? I need to do that too. And we're back. I am Michael Hobbs. I'm a reporter for The Huffington Post. I'm Sarah Marshall. I'm working on a book about the satanic panic.
Starting point is 00:00:47 And if you want to support the show and hear fun bonus episodes, we are on Patreon at patreon.com slash you're wrong about. And there's other ways that you can support the show or you could just listen to the show and not do anything. And that's cool too. Just support us emotionally. We are emotional support listeners. And today we are talking about the U.S. Public Health Service study of untreated syphilis
Starting point is 00:01:10 in Macon County, Alabama. I'm stressed. It is objectively stressful. This is going to be a two-part episode. Today we're going to talk about the origin of the study and next week we're going to talk about the downfall of the study. I should say here right off the bat that this includes a lot of like rough quotes from 1930s racists writing letters to each other.
Starting point is 00:01:36 So you can imagine the kinds of things we're going to encounter in this episode. But now that we've established that it's going to be stressful and upsetting, what do you know about the Tifke syphilis study? I mean, what I think I understand it to be is that the U.S. government wanted to study the effects of syphilis on the human body and they were like, we need to watch some people just have some syphilis. And so my understanding is that they mainly use black men. Yes, 100% of the subjects were black men.
Starting point is 00:02:08 Okay. Yeah. And so my understanding is that like these men had syphilis and we're not told they had syphilis. True. Yeah. And we're not treated for it. And what did this happen?
Starting point is 00:02:18 Was this the 1920s? It started in 1932 and it went on for 40 years. Oh my God. It is known as the longest non-therapeutic experiment on human beings in the history of medicine and public health. Wow. That's what you find in the textbooks. That's really, yeah, that's terrible.
Starting point is 00:02:36 Tell me how big do you think the study was? Oh God, I have no idea. Isn't that funny? Like all I really know is that it happened at some point. My guess for a study of that nature is that we would want a large number of subjects. My guess is like 500 to 1,000 subjects. Oh, that's actually quite close. Really?
Starting point is 00:02:58 There were 600 men in the study total, but 200 of them were controls. Okay. So they didn't actually have syphilis, although they were also deceived about the nature of the study. Okay. But there were 400 men who had syphilis and who were not, deliberately were not treated. We don't have clear numbers on how many men participated in the study just because the science was so bad, but at least one third of those men died of syphilis.
Starting point is 00:03:28 And another part of the toll of this study that doesn't get talked about as much is that at least 22 wives, 17 children and two grandchildren were infected with syphilis. And I've never even thought about that before. Right. I'm amazed at how this fact has lived in my brain for so long, but I've never just like idly on like a bus ride or something, then like, what would that involve? Like I should read about that. Well, I mean, I think it's a really important study to talk about right now because first
Starting point is 00:03:57 of all, I fucked up in one of our Michelle remembers episodes. I said something along the lines of blah, blah, blah, the Tuskegee study where they infected a bunch of black men with syphilis, blah, blah, blah. And that is one of the most common urban legends about this study that the men were deliberately infected with syphilis. And when we were talking about this episode, I referenced that and you went, hmm. And so, so you kind of had a pal. I know I spoiled it.
Starting point is 00:04:26 I'm sorry. And so then after that happened, I was like, oh, yeah, like I have thought of it that way. And there were in fact US government studies where they did deliberately infect people with syphilis and we will talk about them. But the purpose of the Tuskegee syphilis study was to study latent syphilis. So all of the men who were enrolled in the study had already had syphilis for more than five years. Right.
Starting point is 00:04:49 So specifically, it's like, it's not that the US government didn't infect them with syphilis because the US government didn't do that kind of thing. It's just because for the purposes of this experiment, why would they bother doing that? Right. Exactly. Yeah. And I should also quickly bust the myth that the Tuskegee syphilis study has anything to do with the Tuskegee airmen, which is a completely different thing.
Starting point is 00:05:11 Do people think that? Well, the problem with that is that the Tuskegee airmen is referred to as the Tuskegee experiment. Oh. Because there are like, let's see if black men can fly planes? Yes. Literally. I know about the Tuskegee airmen because there is a TV movie about them with Lawrence Fishburne.
Starting point is 00:05:28 Yes. I was just going to talk about this. Oh. Another thing that does not help is that there is also an HBO movie about the Tuskegee syphilis study also starring Lawrence Fishburne. Well, it's not Lawrence Fishburne's fault that Hollywood was only willing to cast three black actors in the 90s and he was one of them. So the other reason I wanted to talk about this now, other than just my own penance for
Starting point is 00:05:50 getting this wrong, and thank you to all the listeners who pointed that out, by the way, it's really good that we get pushback on this kind of stuff. The other reason I want to talk about this now is the Tuskegee syphilis study was a conspiracy. And we're at a time where we talk about conspiracy theories constantly, and this is a bunch of high-level expert people meeting behind closed doors. With, I bet, projects with silly code names. Yes. And deciding to harm the most, literally the most vulnerable people in our society at that
Starting point is 00:06:25 time. Like, this is it, right? If you want to find a real conspiracy. Well, they could also secretly sterilize black women who came to get medical care, and in fact, we're also doing that, so they had a lot of bases covered at this time. And so one of the quotes that goes around in an internal memo, one of the architects of the Tuskegee syphilis study said, in writing, we now know what we could only surmise before that we have contributed to their ailments and shortened their lives.
Starting point is 00:06:54 Well, we could only have surmised before, which is fascinating too, because it's like, was that ever in doubt though? What was the purpose of this? But what's interesting is that quote from 1950 is in sort of all of the literature that you read about the Tuskegee syphilis study. It's everywhere. Like, that is like the smoking gun of they knew what they were doing. But what I think is really interesting, and I think the central you're wrong about with
Starting point is 00:07:15 this episode, is the second half of that quote. One of the things about this conspiracy, and I think a lot of conspiracies, is that people thought that they were doing a good thing. Really? The first half of the quote is, we know that we have contributed to ailments and shortened their lives, and then he continues, I think the least we can say is that we have a high moral obligation to those who have died to make this the best study possible. Oh.
Starting point is 00:07:43 And you see this over and over again, is that they use the fundamental immorality of the study as a reason to continue. This becomes the justification for the study that we've gone so far and these men have suffered so much, so it would be a bigger injustice to stop now. That's why people stay in apocalyptic cults, you know, when the apocalypse fails to manifest. They're like, well, I've already alienated my friends and family, so like, this has to be true. Totally, yeah.
Starting point is 00:08:11 And it's also, I think, very important to acknowledge that with the morality of this, that there was never a big moral leap from doing something good to doing something bad. It's actually really chilling that when we walk through the steps of this study, it's all little stair step moral sacrifices. We've already killed quite a few people, so it's, yeah, it's got to keep going. So I just think it's important to keep all of that in mind as we start, because none of this is a defense of what anybody did in designing the study, but I think it's important to understand the ways that conspiracies, true, genuine, evil conspiracies are most
Starting point is 00:08:51 often organized by people who do not believe that they are doing evil. I have, like, my own questions about Star Wars, which I feel like connect to this thesis, which are, why would they call it the Death Star? Why wouldn't they call it the Hope Star? Or the Salvation Star, like we're saving these people. Or the Salvation Star, or the Empire Star, you know? It's like, we know that the way governments like the Empire and Star Wars function is more allowing the lines of the Reagan administration.
Starting point is 00:09:23 So we have to start with syphilis, because the structure, the extremely weird structure of this disease is really important for understanding how the Tuskegee syphilis study came about. Tell me about syphilis, Mike. Yeah, what do you know about antphyllis? What do you know about the course the disease takes in the body? Okay, so I watched this really cool PBS special once about this monastery where they found all these bones of former clergy, and we're looking at them and realize that a lot of them have had advanced syphilis.
Starting point is 00:09:52 And so I understand that it's been with us for a long time. Yes. I feel like maybe it initially presents with, like, mild symptoms, like maybe a burning sensation. I feel like most things give you a burning sensation. And then my understanding is that if it's left untreated, it deteriorates your brain. I think it can cause blindness, maybe. Like, like, just over time, it's extremely bad news. But so, yes, the disease has been around since the 1400s.
Starting point is 00:10:18 We don't know exactly when. I have 131 pages of notes for this episode, and I think this is my favorite quote in the entire thing. He's going to shoot your water early. We can be done after this. So this is something that was around Europe for literally centuries, and it's just such a strange disease that everybody had a different theory of it. So this is the quote.
Starting point is 00:10:39 The French called it the Spanish disease. The English and Italians called it the French disease. The Russians called it the Polish disease. The Polish called it the Turkish disease. The Turkish called it the Christian disease. The Tahitians called it the British disease. In India, it was called the Portuguese disease, and in Japan, it was called the Chinese pox. We call COVID Chinese Market Syndrome.
Starting point is 00:10:59 Yeah. It's just, it's a good illustration of the way that diseases are never free from politics. Yes. The minute you get a disease, you're instantly going to put it into a framework that you can understand, which is it must have come here from some societal other that we dislike. Yeah. It's not our fault. So syphilis has three phases.
Starting point is 00:11:19 The first phase is you get like a little polyp, like a canker sore type thing on your junk or in your junk. And so one of the reasons why men were chosen for the study is that cis dudes are more likely to notice when they have syphilis because their genitals are on the outside of their body and they're like, hey, a polyp. The problem with syphilis, what makes it so difficult to know when you got it is that these little canker sores, they don't itch and they don't hurt. Oh, but can you get it inside your vagina?
Starting point is 00:11:51 Yes. Okay. So this is another reason why oftentimes early syphilis studies were done on men. I mean, also just like general misogyny, but men are much more likely to be able to pinpoint when they got the disease. So they can tell you like, oh, three years ago in May, I saw this polyp, right? There's women, it's like if they test positive, they might have had a polyp like a month ago or like eight years ago.
Starting point is 00:12:12 So that's the first phase. You have that. It goes away on its own. It goes away after a couple of weeks. And then there's phase two called secondary syphilis. You get more lesions, but they're all over your body. You oftentimes get a rash on the palms of your hands. Oh, do you think that has to do with like the thing about how masturbating will give
Starting point is 00:12:31 you like hair on the palms of your hands? Oh, I haven't thought about that. Maybe that is related. Maybe. So you have all these weird lesions, this rash on the palm of your hands, but that goes away. How long do they last? These things.
Starting point is 00:12:42 It can be like two weeks to six weeks. Okay. And then after it goes away the second time, then you get what is called latent syphilis. And this is where it gets real weird. So these numbers go back and forth, but for the sake of simplicity, roughly one third of people who have latent syphilis get spontaneously cured. So some people, it's like you test their blood 10 years later and there's no syphilis and it just went away on its own for reasons that we don't totally understand.
Starting point is 00:13:09 The syphilis just gets bored. And another third still test positive for syphilis, but they have no symptoms. Never had another outbreak. They're just like, oh, I guess I still have syphilis. The final third are people whose bodies get attacked by syphilis. It can happen anywhere. This is what's so weird about syphilis and why for years it's called the great imitator. It can cause blindness.
Starting point is 00:13:34 It can cause deafness. It can cause insanity. It can cause loss of nerve function so your arms and your legs go numb. It can deteriorate your bones. It can deteriorate your skin. It can cause something called aortic weakening, which makes you more susceptible to have a heart attack. It causes paralysis.
Starting point is 00:13:48 Anything in your body can basically start getting eaten away by the syphilis. And that can happen five years after or it can happen 50 years after. That's terrifying. Yes. An extremely important aspect of latent syphilis is because the symptoms are so wide, it causes such a wide range of illnesses. The only way to tell if somebody had it is to do an autopsy, because if somebody dies of a heart attack, you can't say, oh, it was caused by syphilis.
Starting point is 00:14:17 If somebody goes blind, you can't say it was caused by syphilis unless you do an autopsy and you get the tissues and you look at them under a microscope. So this becomes a really important aspect of the study later on. And also another thing that makes it really hard is that most of the early treatments caused the same symptoms as the syphilis. Oh, so like mercury and stuff. You knew where this was going. Why did we just give mercury for everything?
Starting point is 00:14:44 It's like you go to a doctor at any point in history and are like, I have a cough and they're like, mercury it is. I think the problem is mercury is so cool. Yeah. Mercury is someone in like 18, 20 and are like, this has to work for just everything. It had to be magic, right? It had to be good for you. Another problem of using mercury to treat syphilis is that mercury also causes a large
Starting point is 00:15:08 cluster of weird symptoms, right? So like it can make your hair fall out and sort of make your gums kind of start to rot, which are also things that might happen with syphilis because syphilis is so weird. Yeah. And then how do you get people to come in for treatment if all you can offer them is like maybe something worse? They're already experiencing. Yeah.
Starting point is 00:15:27 So the big breakthrough that explains a lot of what happens in the Tuskegee syphilis study comes in 1906. There's a German chemist named Paul Ehrlich who comes up with, it's this weird derivative of arsenic that is called arsphenamine or neo arsphenamine, but the sort of the name that it gets known as eventually is salversan, and that's easier to say, so I'm going to say that. Salversan. Salversan.
Starting point is 00:15:58 He eventually wins the Nobel Prize for this. It does actually treat syphilis. There's something in it, it's poisonous enough that it kills the syphilis. So for the time, this was a massive breakthrough. And when do people start being able to use this? So this was widely distributed around 1910 and became something like 1910s and 1910s, but what was really difficult about salversan was that it takes ages to actually work and it takes all these treatments and it's more effective or they thought it was more effective.
Starting point is 00:16:32 It's not clear if you sort of combined it with other heavy metal treatments. So over the course of the 1910s, they were like, okay, salversan is good, but you also have to mix it with mercury or you have to mix it with this black stuff called bismuth, which is like this other weird poisonous heavy metal thing. It's actually the reason why Pepto-Bismol, like that's where we get the bismol in Pepto-Bismol because it was derivative of bismuth originally. That's the biz. And so one of the historians that I interviewed for this is named Susan Reverby.
Starting point is 00:17:00 She's written two books about this. And so this is an excerpt from Susan Reverby's book on the Tuskegee study. The best treatment of early syphilis in 1939 consisted of alternating eight to 12 week courses of bismuth and salversan without interruption for a total of 60 weeks. So more than a year. Oh my God. If the patient was believed to be in latency, the treatment was modified to three eight week courses of weekly arsenic injections alternately with 10 weekly injections of bismuth
Starting point is 00:17:29 followed by intermittent additional courses of more bismuth for a total of 80 to 100 weeks. Oh, that is rough. So we're talking long treatments. It's bismurable. It's visorable. Bismurable. There's also I had to like double check this because it sounds so bananas that one of the problems with giving people all of these heavy metals and these regular injections is that
Starting point is 00:17:52 it lowers their body temperature. So a thing that you have to do to counteract this is to raise their body temperature. So one way of doing this was to put people in this cabinet like a hot yoga cabinet where they heated up to like 110 degrees. Another way to increase the body's temperature is to give people malaria and that causes a fever and then you give them quinine which tamps down the fever and then like a couple weeks later you give them malaria again. I feel like you could give someone a fever without giving them malaria but like I don't
Starting point is 00:18:24 know. I'm not an old time doctor. You do understand why over history there is this attraction to homeopathic medicine with the approach of like we're going to treat you with herbs and anything bigger than that you're going to go quietly sitting in the forest. I mean it is the same logic almost as a chemotherapy that basically like we're just going to nuke your entire body and hope that it kills the bacteria before it kills you. So that's the state of the science at the beginning of the Tuskegee syphilis study
Starting point is 00:18:58 which is what we're finally going to talk about now. There are essentially two explanations for how the Tuskegee syphilis study got started and I want to walk through both of them because I think that they are both true. So the first explanation is the good intentions explanation. This is the road to hell is paved with explanation. Yes, exactly. So at the time the country was gripped with kind of a moral panic about syphilis because all of this data was coming out about World War I soldiers and how much disability syphilis
Starting point is 00:19:30 had caused for the army. It was the number two cause of soldiers losing time just after the Spanish flu. It was like a huge problem. They're like, excuse me, don't get killed by syphilis. We have to get you killed by someone else your age who speaks a different language. So there's an agency of the government called the Public Health Service which we don't really talk about anymore but just think of it as basically the CDC. It will eventually get folded into the CDC so they have an entire division focused on
Starting point is 00:19:58 venereal disease. And they know that venereal disease is higher in black and rural and poor populations but they don't know by how much. So in the late 1920s the Public Health Service sets out on a study to get a baseline. So all they want to do is find out how bad are syphilis rates in like rural Louisiana, rural Mississippi, rural Alabama. We know that it's there. We know that it's a problem but we don't know how bad.
Starting point is 00:20:26 So the first study takes place in Mississippi where they basically just go around to these rural areas, give people blood tests, take the data and they find that roughly 20% of the rural black population test positive for syphilis. Really? It's really bad. So they conclude this study in their sort of concluding report they say syphilis is probably the major public health problem among rural Mississippi Negroes today. So they know that this is a problem.
Starting point is 00:20:54 They know that they have to do something about it. So they start coming up with a large scale treatment program. Okay. The Tuskegee syphilis study began as a program to offer treatment for syphilis, for rural black populations. This is the heart of the good intentions explanation. Interesting. So basically they start fishing around for philanthropy funds because they can't afford
Starting point is 00:21:15 to do it themselves. So they find something called the Julius Rosenwald Fund which is a Chicago based foundation that is specifically dedicated to the health of the rural black population. So they go to this philanthropy and they say, okay, we want to do a six state across the South large scale program to find out who has syphilis and offer them treatment. So they get $50,000 in 1930s money to start doing this study. So they fan out across the South. One of the places that they go is Macon County, Alabama, which is where we're going to set
Starting point is 00:21:52 our scene. Okay. They start testing across the South, Macon County, it's not the highest, but it's one of the highest. They find a 36% positivity rate. And they also know that the Tuskegee Institute, which is now Tuskegee University, which is an institution founded by Booker T. Washington, it started out as a teachers college that would train black teachers and then send them into schools.
Starting point is 00:22:15 It then expands into all these other areas. It eventually has a hospital that has like black doctors, black nurses that treats black patients. So we have a county with extremely high syphilis rates and an institution that has already dedicated itself to helping the black population. So the public health service is like perfect. It's all here. So we're going to make Macon County the center of our sort of Alabama team.
Starting point is 00:22:39 And then they pick other locations in other Southern states. So in 2007, Harriet Washington published a book called Medical Apartheid, The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present, which is terrific and has a great scorching chapter on the Tuskegee syphilis study. So this is an excerpt from her book describing the conditions in Macon County when the researchers get there to start the study. She says slavery had ended in Macon County nearly 70 years earlier, but in name only. Except for the staff and students of Tuskegee Institute, most of the county's 27,000 blacks
Starting point is 00:23:14 lived the same lives as their enslaved forebears. In 1932, 82% of its residents were black and half of those lived far below the poverty line. Their median income was a dollar a day. Trapped in the exploitative cycle of tenant cotton farming, they were chained by debt and forced to work the same land as had their enslaved grandparents. And like Alabama slaves, they owned nothing, not even the crumbling shacks they lived in. These sharecroppers, including children, were weighed down by 100 pound bags of cotton, living and working under the orders of white landowners who kept them in economic thralldom
Starting point is 00:23:45 by paying low prices for their crops and charging inflated prices for food, seed, and other necessities. Those blacks who tried to flee the land were arrested, punished, and returned, or worse, just as their enslaved grandparents would have been. The only thing blacks had was a great deal of illness. A lot of these people have literally never seen a doctor, because at the time medical care is totally segregated, so you can't go to white doctors. And there's only 16 doctors in the entire county, and only one of them is black.
Starting point is 00:24:15 So all of that is to say, as they begin this massive treatment diagnostic program, this is an extremely vulnerable population. So I am going to send you a JPEG. Hang on. Ooh, okay. Do you want to read that? Okay. So it is a flyer.
Starting point is 00:24:35 It looks like something that you would find tacked up on a bulletin board or passed out at a busy intersection or something like that. And it says, colored people, do you have bad blood, free blood tests, free treatment by county health department, and government doctors? You may feel well and still have bad blood. Come and bring all your family. And then it lists dates and times. So they're really...
Starting point is 00:25:03 This is an aggressive campaign. Yes. This is the flyer that they start putting all over the place in Macon County, where they are testing people and giving them treatment. And this is also, to me, this is an important moment, this flyer, because it is the first lie. It says on the flyer, do you have bad blood? Yeah.
Starting point is 00:25:24 They're not saying anything about syphilis. Which is interesting, because bad blood is a lie that is used on white people at the time, but is used to sell them keratol. I mean, later on, people will defend this lie by saying the rural black population of Macon County understood that the term bad blood was a synonym, a polite way of saying syphilis. So is there any legitimacy to this claim? What do you think about that?
Starting point is 00:25:53 No. No. Bad blood was a petrol term that people used for all kinds of stuff, right? Right. Mental illnesses, they used it for things like chronic fatigue. It was just something of like, something is wrong. Like saying, I feel ishy. Yeah.
Starting point is 00:26:08 Yeah. Like, what does that mean? Nothing specific. This is what I mean by the little stair step in morality, is that you can defend a lie like that by saying, look, the whole purpose of this is to give people treatment. So we trick them a little. It's for the good. Yes.
Starting point is 00:26:23 And venereal diseases are not openly discussed in society at that time. But also, like, I can see a situation where you kind of bring people in from broad swaths of society with this general, like, do you feel ishy? But then, like, once you have them there, you're like, have you noticed a little thing on your penis? Yes. Exactly. And then you can have a frank conversation about what you're looking for.
Starting point is 00:26:49 Well, that, I mean, this is the thing, is that you can talk yourself into this kind of thing. Yeah. And medicine is a long and illustrious history of triumphs and heroism and also charlatanry and also of people talking themselves in to doing morally indefensible things step by step by step by step over and over and over. And medicine as in law, I would say, actually, because these are two fields that ask to be enshrined and worshipped from afar, but actually are a bunch of people, like, sticking their
Starting point is 00:27:21 fingers and gushing wounds and doing their best. So in the official documents for this project, the plan was when people tested positive for syphilis, they would tell them, okay, you have bad blood, and they were planning to offer them 20 injections of heavy metals and 192 mercury rubs. Where do they rub the mercury on your area? This is so gross. Do you want me to read you the instructions of what they were telling people? I do.
Starting point is 00:27:50 I do. They would send them home with mercury and a rubber belt, and so the instructions were, rub the salve into the skin on your stomach when you get out of bed in the morning, then put on the belt. See that the belt fits snugly. Wear belt all day and take it off before you go to bed at night. So basically, like, here's this poison, here's the way to press the poison into your skin as much as possible all day long.
Starting point is 00:28:16 I like how we've had a theme in our past few episodes of, like, American history going poison. Try it. Like, it's apple juice. I mean, look, the mercury's bad, but it is also noteworthy that, like, they were giving people what they thought was treatment. Yes, right. It's not fair that we're dragging them for the very thing that we think they should be
Starting point is 00:28:36 doing. Yes. Right. So, but here's a question. Like, are people given information about what's happening? Are they being told, like, this is syphilis? No. This is actually a very important aspect of this, is that at no time during the study
Starting point is 00:28:49 is anyone told that they have syphilis. Yeah, see, that's really bad. They are only told you have bad blood. But, and what's the rationale for that? This is incredible. There is still a debate about whether or not the Tuskegee study was racist. Like, this is a debate that continues in, like, medical journals to this day. Oh my goodness, come on, you guys.
Starting point is 00:29:10 I have found medical journal articles from 1999, as recently as 1999, saying that they had to lie because these were an uneducated population. These were people who wouldn't understand what the term syphilis meant. And so the only way to get them to take their treatment was to just tell them, you have bad blood. My father didn't cheat on my mother. His penis fell into that other lady by accident. So it's such bullshit because in arguing against the influence of race, they're actually demonstrating
Starting point is 00:29:43 what race is doing to the researchers in this project. And even researchers fucking 25 years after it comes to light because doctors diagnose you with diseases you have never heard of all the fucking time. You have, like, fibromyalgia and, like, then a doctor walks you through what it is and what you need to know about it and, like, gives you the various treatment options. Like, the fact that, oh, these people didn't know what syphilis was. Like, that is most medical diagnoses. Yeah, it's already pretty bad.
Starting point is 00:30:11 So it's interesting that we start off with a foundation of, like, good intentions and then ignorant white intentions, like, very quickly taking the turn into, like, we can't tell them what we're doing because we're helping them, but they're not our intellectual equals. Exactly. But even as they're planting these little seeds for what's going to get really bad, you know, people point out later that they're actually treating a lot of other diseases that are not syphilis. So they give out eventually 3,500 typhoid inoculations.
Starting point is 00:30:41 They're immunizing kids against diphtheria. They're immunizing kids against smallpox. So it's not only syphilis that they're looking at. I mean, they're primarily interested in syphilis, but they're also, you know, they're giving people food. They're giving people seeds, apparently, to grow crops. There's all kinds of other sort of public healthy stuff that they're doing while they're coming into contact with these populations once they come into the center.
Starting point is 00:31:03 So all of this is happening. It's considered a success. And then in 1931, it is canceled because of lack of funds, because we're in the middle of the Great Depression now. This philanthropy says the heavy metals are expensive. The staff is expensive. We can't do this anymore. So we're going to cancel the entire project.
Starting point is 00:31:24 It's actually, I mean, it's so important to keep the background racism of this context in mind that as things get really bad in the depression, in Macon County, there's a government effort to get flour to poor people, because like people aren't being able to eat because all of their crops are going bad. It's also like a really bad harvest year for crops. And so there's this government program that distributes flour to the poor farmers who can't grow crops anymore. But you have to be white to get the flour.
Starting point is 00:31:49 What? Yes. Why? You also have to prove that you're not getting any other government support. Wow. Because what if people get free flour, Mike? The flour welfare moms. I know.
Starting point is 00:32:00 Bracking up the flour. I just think this is such an important thing to mention, even though it barely comes up in the other descriptions of this study that were written, is that in the 1920s, the 10 years before this study was carried out, there were at least 13 confirmed lynchings in Alabama. Yeah. So it is also baffling to me that people write about how race had nothing to do with this study when it's like, this is the context that the study is taking place in. Oh yeah.
Starting point is 00:32:26 Lynchings, I think, were still considered an appropriate date night for a lot of white people. I think if you have only seen the pictures of lynchings that don't depict the crowd of smiling white people hanging out at the base of the tree from which they've just hanged someone, you really, yeah, seek those out. So anyway, the study gets canceled in 1931 because they're out of money. So then the two government doctors who are in charge of this project, their names are Talaferro Clark and Raymond Vondeler.
Starting point is 00:32:58 These are the two guys that have been working on the demonstration project so far. Clark and Vondeler. Clark and Vondeler. What are they like? Does either of them have a mustache? I believe both of them do. As the study gets canceled because they can't afford the treatments anymore, these guys come up with the idea, why don't we continue doing the project but not give treatment anymore?
Starting point is 00:33:24 They did not design this as a 40-year study to never give these men treatment again. They designed it as why don't we keep the study going for six months? We now have all this data, we have all these people who have tested positive for syphilis. These guys aren't going to get treatment anyway. So rather than shutting down the project and losing all these contacts, why don't we use this as a scientific opportunity to try and find out more about this disease and how it works on the body? Why don't we do more tests of these guys just for six months?
Starting point is 00:33:55 And then once we can afford to, we will give them treatment. Yeah. I mean, this is tough, right? Because I feel like this is the kind of thing where you could go in believing that you really were going to start treating people in six months and then I can imagine that it's multiple steps to never treating. It's like, oh, we still don't have funding, so it's another six months and then, I mean, what happened?
Starting point is 00:34:17 Well, this actually brings us to the second explanation. Do you want to guess what it is? That it was secretly all along an attempt to find a population and observe the effects of syphilis in them? Sort of. As a clue, it starts with a U and ends with a Gen X. Fantastic. So this is a very important aspect of the study.
Starting point is 00:34:42 The entire study was designed to prove a racist hypothesis. So at the time, the theory of syphilis was that it affected the brains of white people and it affected the nervous system of black people. And so the idea was that because white people have more advanced brains, syphilis attacks them. So the actual purpose of extending the study for the six months is to confirm that there is no neuro syphilis among black people because their brains are undeveloped. Can you talk for a second about just the basic argument of eugenics at this time?
Starting point is 00:35:27 Because my understanding is that it's a hierarchy that white people invented where there's this spectrum of humanity between the most human and the least advanced human closest to our primate ancestors. And white people are at the very top, obviously. And interestingly, Asians are in the middle because they have the intellectual capacity to imitate. So one of the things that comes out is when European travelers start going to China and they're like, holy shit, this is like a really advanced society with incredible architecture,
Starting point is 00:36:03 math. They have all these inventions that we didn't come up with until very recently and what? How did this happen? So the theory becomes other Europeans must have visited like 100 years ago or something and the Chinese people are learning to imitate it. So even when presented with counter evidence, like maybe we're not the most advanced society, it's like, oh, they're only advanced because they're copying us. And so this is an excerpt from an article by Alan Brandt, who's a researcher who specifically
Starting point is 00:36:31 writes about the intersection of racism and the Tuskegee syphilis experiment. So he says, by the turn of the century, Darwinism had provided a new rationale for American racism. Essentially, primitive peoples, it was argued, could not be assimilated into a complex white civilization. Scientists speculated that in the struggle for survival, the Negro in America was doomed. Particularly prone to disease, vice and crime, black Americans could not be helped by education or philanthropy.
Starting point is 00:36:59 So one of the founding eugenicists myths that I feel like has kind of gotten lost now is this idea that black people were stricken with STDs at much higher rates than white people. So even this sort of this study that set out to find people in Mississippi, to test them, to find out what the baseline level of STDs was, even that was based on this idea that like, well, we know that STDs are really high in the black population. Even that assumption was based on eugenicist presumptions. What if they'd gone to the Hamptons? A very important component of this was not only that black people had higher rates of
Starting point is 00:37:38 STDs than white people, but that they refused to get treatment for them. So this is another excerpt from Harriet Washington's book. Central to race medicine was the belief that blacks were different from whites and that a disease could have differing effects on blacks versus whites. There was considerable belief that syphilis was a more indolent disease in blacks than in whites. It was noted that many blacks had syphilis and few were dying of it. So it was this idea that syphilis attacks black people at a slower rate and doesn't
Starting point is 00:38:07 have as severe effects on black people as it does on white people. Because white people are more evolved and therefore more susceptible to illness according to this metric. Yes. It doesn't really make sense, but like, we're delicate. We're delicate flowers of intellect and evil. And so you can see how, given these society-wide stereotypes, the idea of we're just not going to treat people for syphilis, there's already this pond of muck in your brain saying, we
Starting point is 00:38:39 don't really have to treat them because syphilis isn't as severe in them anyway. Right. So we have to look at the foundation of societal racism on which this entire experiment is built from the beginning. Yes. This is from Clark, the doctor who's designing this aspect of the study and wants to explain it for six more months. He's talking about why syphilis is so high in Macon County.
Starting point is 00:39:00 He writes, this state of affairs is due to the paucity of doctors, rather low intelligence of the Negro population, depressed economic conditions, and the very common promiscuous sex relations of this population group. These relations not only contribute to the spread of syphilis, but also contribute to the prevailing indifference with regard to treatment. So again, we see they don't want treatment anyway. Yeah. And you're starting off a study where you're going to eventually deny treatment or any
Starting point is 00:39:29 knowledge about their condition to the patients and justify it by being like, this demographic of patient wouldn't care to know anyway and wouldn't seek treatment anyway, and it's fine. We know. I mean, you can tell that you're practicing dehumanizing eugenicist categorization on someone if you're seeking in any way to generalize their behavior or what they might want or your ability to understand their mind based on your racial classification of them. Right.
Starting point is 00:40:01 It's also, I mean, not that there's any point in debunking this stuff, but there's this idea of sexual profligacy. They can't help but have a ton of sex. That's why syphilis rates are so high in the black population. Later on, people do follow-up studies where they find out that 61% of syphilis cases in Macon County are congenital syphilis. They got it when they were born. So it's like even as just a basic preset like black people have more sex than white people,
Starting point is 00:40:27 that's not even established. They're just taking that as a given. There's also something really interesting that in warm climates around the world, you have a disease called yaws, which is basically an infection of a wound. It's something that you get when you're walking around barefoot on dirt roads and there's rocks that cut you and then the infection will get into the wound. Syphilis is a close cousin to syphilis. So a lot of the syphilis tests that they're giving people are actually detecting yaws,
Starting point is 00:40:53 which has nothing to do with sexual behavior at all. So again, just on a basic fact-finding kind of scientific basis, this is not sound science. There's also the fundamental error of interpretation, where it's interesting that they're saying, okay, black people in this county are a little bit reluctant to get treatment. Other than thinking, okay, does this have to do with the fact that there's literally one doctor or they live hours away from a clinic or they cannot afford to get treatment? Are those things important? No, no, no, no, no.
Starting point is 00:41:27 It's that they're black and black people hate getting treatment. This is the argument we still see about how white people are in some way better than everyone else because we're more likely to use the resources that we are more likely to have. Yeah. I also interviewed for this a medical historian named Vanessa Northington Gamble, who was on the committee that worked with Bill Clinton on getting an official apology for the syphilis study in 1997. And she's written really interesting articles about Tuskegee showing that one of the myths
Starting point is 00:41:57 of the Tuskegee study is that this was sort of the origin of black people mistrusting the medical system. And she shows that medical experiments of this type have been taking place since slavery. There's a long history of this kind of shit being done to black people and of black people knowing this. Right? Yes. And so there were folk tales like urban legends basically that went around among enslaved
Starting point is 00:42:22 people of something called night doctors. These doctors that would come and kidnap you as you slept and go do experiments on you. And that is something that happened. Yeah. They would actually take people and then do experiments on them of like pain resistance and these just like horrific studies. This is actually another thing that you don't find among the doctors at this time who were designing the study of like, well, why are black people a little bit resistant to get
Starting point is 00:42:45 treatment? It's like, well, they don't trust the medical system for pretty understandable reasons. Yeah. And for reasons that endure. Yes. But to me, the reason why it's important to talk about both explanations, that they're good intentions and they're eugenicists, I still think both of those are true. That it's very easy to want to help a population and still consider yourself superior to that
Starting point is 00:43:12 population. Yeah. I think we think of these as a dichotomy, but this actually characterizes like I worked in international development for 11 years, like this still happens. Right. I want to help these people, but I'm going to decide how to help and I know best and they're not going to be consulted about how they're being helped or even going to be told what's going to be done.
Starting point is 00:43:33 And so I can help people in a way that reinforces my superiority. Right. And when we look at things like policies to take indigenous children away from their parents, to take their language away, to sterilize people who we think shouldn't be procreating, what we see over and over again are members of the majority group defending what they did on the grounds of why they did it. And I think it's very important to stress that good intentions and terrible effects are not mutually exclusive.
Starting point is 00:44:04 And so this is fast-forwarding a bit, but in the 1950s, there's all these ethical standards come out after the revelations about doctors collaborating with the Nazi regime and doing all this euthanasia, terrible shit. After we learn about the Tuskegee experiment, after all of this becomes public, the author of the first major book about the Tuskegee study, he's interviewing one of the guys who worked on the study and he says to him, look, you were doing this study in the 1950s. There's all this information coming out about Nazi doctors. There's all these ethical rules coming out in the medical system that would make your
Starting point is 00:44:41 study illegal to design from scratch. You didn't ever think, hey, I should maybe reconsider this study in light of the information that's coming out. And what this guy says to him is, well, those guys were Nazis. Yes. I, who I'm doing fundamentally the same thing, am not a Nazi. I'm not wearing a little outfit, as you can see. Because I think the sort of talking about the good intentions of the people that designed
Starting point is 00:45:07 the study can sound like a defense of them, like, oh, they were doing their best, whatever. And I don't think it's important for that reason remotely. I think it's important to know how these things happen. Exactly. And this is the way that it happens over and over again, and this is the way that conspiracies form over and over again. Yeah. The intentions are only as good as the intentions have are.
Starting point is 00:45:25 And so in 1933, this six-month study period begins. They're essentially setting out to prove the differences between syphilis and white people and syphilis in black people. So they're like, never mind, actually, this is perfect. So they basically start recruiting people. And they're only interested in men who have had syphilis for at least five years. One of the people who I interviewed for this is a woman named Lily Head whose father was in the study.
Starting point is 00:45:54 His name was Freddie Lee Tyson. And her sort of main thing and the thing that she said was the most important to mention on the show is that what we've really lost in the historical reckoning with Tuskegee is really looking at these men as individuals. Like, it's actually really rare to hear about the actual victims of the study. Yeah. One of her main points was that it's true that a lot of these guys started out as poor sharecroppers, but these men did not remain poor sharecroppers for most of their lives.
Starting point is 00:46:24 So what she said about her father, she said, I wish everyone could have known him. He grew up in super poor Macon County. He ended up working in forestry. One of his jobs was replanting trees in these parts of Alabama that had been used for cotton for so long that they had no more nutrients in the soil. And Alabama did this huge project to replant forests on all of this land. He was super proud of the fact that he ended up building the barracks that housed the Tuskegee airmen.
Starting point is 00:46:51 He was eventually a firefighter. He became a really skilled carpenter. He moved to Texas. He moved to Connecticut. She said, you know, these are people who were uneducated. Only 20% of the subject of the study ever got more than sixth grade education because that was the only education that was available in Macon County. But that's where a lot of their education stopped because that's what was provided.
Starting point is 00:47:12 But they weren't stupid, right? So a lot of these guys ended up being like ministers. They got college degrees. These are not people who didn't know what was going on. She also mentioned that her mother, Jenny May Neil Tyson, both her uncle and her cousin ended up in the study. Lily now works for a foundation called Voices for Our Fathers Foundation, which is trying to bring more attention to this and they're trying to do a memorial garden in Tuskegee.
Starting point is 00:47:36 And their website has a list of 623 men who were the victims of the study, and it's really striking how many of them have the same last name. So because the information about these free tests ended up oftentimes being spread by word of mouth, like, oh, hey, I got a test for bad blood last Tuesday. They're going to be here next Tuesday. The effects of the study ended up being concentrated in specific families. Can you tell me more about just who these subjects were? Like just who they were as people?
Starting point is 00:48:05 So a lot of men who end up sort of being part of the Great Migration of African Americans out of the South and into the North, oftentimes they're moving for jobs and a lot of them end up moving three or four times. So this is from James Jones's book. The men were primarily farmers who owned land or worked on shares. Others did a range of blue-collar jobs, from elevator operators to lumber mill workers to fruit picker to day laborer. One man reported that he was a retired school teacher with a college degree.
Starting point is 00:48:31 And so one of the men in the study named Charlie Pollard, this is what Susan Reverby writes about him. Charlie Pollard inherited his farm just outside of Tuskegee from his family and continued to buy land until he had more than 160 acres. He recalled making money from his farming and being able to bargain for the cotton that he harvested with the first mechanical cotton picker in the county owned by a black man. As good at carpentry as at farming, Charlie Pollard built his own house and helped build a Shiloh missionary Baptist church where he was a member on land his family had owned.
Starting point is 00:49:04 He was an officer in the Macon County Democratic Club and district captain for the civil rights organization the Tuskegee Civic Association. Loquacious and thoughtful, he too had a deeply developed sense of the racial dangers of Alabama. And what's interesting also about Charlie Pollard is that his father, Lucius Pollard, was also in the study and died of syphilis in 1957. So one of the sort of lingering tragedies of this study is that a lot of the guys who died earlier, who were the sort of most direct victims of the study of having treatment for their syphilis being denied, a lot of those guys died sort of unheralded deaths simply
Starting point is 00:49:45 because the record keeping in the study was so bad and we're going to talk about that more next episode. We also, we know that at least 1000 children were born to men in the study during the 40 years that the study was going on. But we don't know how many of those children were born with birth defects or died in their first year of life because that's typically when congenital syphilis has the worst effects. So we should also note that like there's a lot about the toll that the study took that we just don't know.
Starting point is 00:50:19 All right, so I'm going to send you another thing. This is a huge component of this phase of the study. Okay. Macon County Health Department, Dear Sir, some time ago you were given a thorough examination and since that time we hope you have gotten a great deal of treatment for bad blood. You will now be given your last chance to get a second examination. This examination is a very special one and after it is finished you will be given a special treatment if it is believed you were in a condition to stand it.
Starting point is 00:50:48 And remember this is your last chance for special free treatment. Yeah. And the last line is in all caps. Terrifying. Do you know what this is actually an advertisement for? What they're actually going to give them in? Some kind of poison. A spinal tap.
Starting point is 00:51:03 Oh. Oh God. Why? Because the only way to confirm that somebody has neuro syphilis, the kind of syphilis that is in your brain is to get spinal fluid. Oh God. That's terrible. It's terrible.
Starting point is 00:51:16 This is terrible. Can we talk about what a spinal tap entails? I don't super duper know but I know that it's extremely painful. I mean it involves putting a needle like into the small of someone's back and you have to obtain spinal fluid. Yes. And it can cause discomfort for days. It's a very invasive procedure and it's something that like, I don't know.
Starting point is 00:51:39 To me it's very obviously unethical to lie to someone about doing that to them because it's not treatment for anything. Exactly. The possible view is that helping them with any health issue they have, it's only going to cause them pain. Yes. This is the central lie of this study is that all of the men believe that they are getting treatment.
Starting point is 00:52:02 If you have discomfort, if you have these weird symptoms and somebody says we're going to give you this shot, it's going to hurt but it's treatment for what you have, it's going to make you feel better, you'll probably sign up. But none of these guys know the actual reason for getting the spinal tap, the reason that they're going through all of this discomfort. Nobody is told. And so, they deliberately leave this until the very end of the six month period because they're afraid that the patients will tell other people.
Starting point is 00:52:30 They specifically say we don't want word getting around. Right. That's terrible. I think this is really bad too. They also start giving them aspirin and telling them that it's like this special treatment for syphilis or for bad blood. This is from Susan Reverby's book. Aspirin is dispensed inadequate medications such as aspirin which was craved as a miracle
Starting point is 00:52:50 drug by the overworked sickly men who marveled at how it assuaged their omnipotent aches and pains. So, basically, these are guys that have never gotten medical treatment before because it's not really available to them. And so, to them, aspirin is a miracle drug. Yeah. Aspirin is a miracle drug. I mean, aspirin is, I mean, if you went back in time and gave people aspirin, they would
Starting point is 00:53:11 lose their minds. So, these guys think that it's a treatment for syphilis. They think that they're getting this special, incredible drug that's helping their syphilis and it's just aspirin. Yeah. So, it's already really kind of a web of lies at this point. Yes. And so, that's the end of the six-month study.
Starting point is 00:53:29 They end up getting 300 spinal taps. And they're basically done. There's a time when they're like literally packing up their office. And then, the other designer of the study, Vondelaire, starts to think about, well, wait a minute. We have all of this data now. We've identified all of these guys with latent syphilis. Why would we just pack it in and abandon that?
Starting point is 00:53:52 So, this is something he writes to Clark in 1933. At the end of this project, we shall have a considerable number of cases presenting various complications of syphilis who have received only mercury and may be considered untreated in the modern sense. Should these cases be followed over a period of five to ten years, many interesting facts could be learned regarding the course and complications of untreated syphilis. So, this is when they start thinking, why don't we extend this six-month thing? Again, it's a pretty small moral stair step, right?
Starting point is 00:54:22 Because you're going from like, we've already done this for six months. So, what's the difference between six months and five years? Yeah. So, at that point, it's like you've already taken on one order of scale of unethical behavior. And now, you are going up another order of magnitude. Yes. Yeah. So, here's that Fondelaire, he's interested in this idea of spontaneous cure that once
Starting point is 00:54:44 somebody has had syphilis for, you know, five, ten years, whatever, do you even need to treat them? Have people attempted animal experimentation at this time? Like is that a possibility? Oh, yeah. Yeah, there's all kinds of rabbit studies. And has that yielded useful results? I mean...
Starting point is 00:55:00 I mean, it's as useful as animal studies can be, right? It's like you find it in rabbits, but like, it's not clear whether rabbits actually mean anything for humans. One thing that Lily Head actually said to me was the entire purpose of the study, all of this shit that they're talking about, they've already established it. There's been other various studies, like untreated syphilis. Like there was no treatment for syphilis for decades. Right.
Starting point is 00:55:21 Right. So, the whole world was a study for a real, a provost of history. So, she's saying like what Lily said to me is like you already have the percentages of spontaneous cure. You have various other studies that have shown how many people just don't have syphilis anymore, how many have symptoms. This data already exists. The only reason to keep doing this is to find out how it affects black people.
Starting point is 00:55:41 Well, another thing that occurs to me is that once you have undertaken this experiment, you started it and then you've lost funding and then shit, you know, your reputation is on the line, your career is going to have to recover from this blow in some way. I can also see it makes sense to accept the sunk cost fallacy of it all. And think never mind, this is a useful experiment, we're just going to do this other thing that probably isn't necessary, but that's what we're doing this for. And you know, Vondelaire ends up becoming the assistant surgeon general. Good for him.
Starting point is 00:56:20 Good old Vondelaire. This study was a ladder into promotion for a long time for a lot of people. I mean, this was considered a very prestigious study. Okay. So, okay. So, then this had like institutional acceptance and enthusiasm. And they're like, yes, we do have to know what happens to black men if they have untreated syphilis.
Starting point is 00:56:37 Oh, yeah. This was not like a Clark and Vondelaire jam. This was like the entire agency was behind this. Fascinating. And that's why everybody sort of aligns around this new study idea of, well, why don't we just sort of see what happens? And Susan Reverby told me that it appears Vondelaire was still telling himself, well, look, we're still in the Great Depression.
Starting point is 00:57:00 If money becomes available for treatment, we'll treat them. But for now, we might as well just follow them for a while, right? We might as well just see what happens. So, there's also a lot of self-deception happening. We're just waiting for events to change. And I think this is also indicative of the morality in that what they are actually doing is a huge shift because originally, the study was about giving people treatment. It was done as a sort of under the Hippocratic Oath type of framework, right?
Starting point is 00:57:29 We are here to find out what the disease is and treat it to the best of our ability. And if we run out of money, then we'll figure something out, but we are here to treat, right? What Vondelaire is proposing is essentially shifting to an observational study. All we're going to do is observe this population and observe the way that this disease affects this population as if we were not here. That's a huge shift. This is not something that the Public Health Service is doing with other diseases. This is not something that the medical public health community thinks of itself as doing.
Starting point is 00:58:00 Right. So, these are special rules that exist only for this experiment. Right. And the Great Depression eventually ends. There's much more money for treatment eventually, but because they've already made the shift in their minds of, oh, we're just observers here, again, it's so important to me how race makes it so much easier to slide down this moral ladder. Yes.
Starting point is 00:58:23 You know, a lot of people say later, they're like, well, there weren't ethical standards in science at the time, and informed consent was not invented until 1957, which is true. But if somebody was doing this to someone you knew, you would find this repellent, right? Just on a basic gut level of we're going to tell you that we're treating you and giving you an extremely painful procedure and fucking lying to you about it. You don't need ethical guidelines to tell you that is not above board. Yes. Imagine going to play racquetball with your friend Walter, Walter from Stepford, and he
Starting point is 00:58:53 tells you about, you know, the experiment that you're conducting happening to him. And you're like, no, not Walter. Right. Because the idea, I think, is that Walter, the white lawyer from Stepford, Connecticut, doesn't need to suffer in order to give something to society. His existence is already legitimate. He's already allowed to be here. Yes.
Starting point is 00:59:16 So the other big shift that happens with this new study design of extending the six-month period is the men become only interesting to the researchers after they die. To track the symptoms of latent syphilis, remember, you have to do an autopsy. So the entire study essentially becomes around just keeping track of these guys until they die. At one point, one of the designers of the study refers to participants as cadavers that have been identified while still alive. That's all they're interested in, is the men's bodies after they die.
Starting point is 00:59:55 And so in 1933, they start sort of assembling the team. The last puzzle piece that they need to get into place is they need to convince the Tuskegee Institute. The Tuskegee Institute has actually been working with the study since before. The Tuskegee Institute has been sort of like vaguely involved, like, you know, they'll go to meetings or they'll advise on stuff. But because they need to be doing these autopsies, they want to bring the men in for yearly physicals.
Starting point is 01:00:21 They want to be taking blood regularly. There's all these sort of other logistical tasks that have to be done. They enlist the Tuskegee Institute to be the sort of logistics partner. And so in this really great article by Alan Brandt, he talks about the weird tightrope that the Tuskegee Institute is walking at the time because it's a black institution. There's a black president. The hospital is run by a black doctor named Eugene Dibble. It's dedicated to the betterment of black people, but most of its funding comes from
Starting point is 01:00:50 white led philanthropies. So they have to be doing this thing where they have to be helping black people, but they also have to be doing it in a way that is sort of palatable for their mostly white donors. And so the Surgeon General writes, you know, an official letter to the Tuskegee Institute talking about this, you know, very exciting opportunity, the Tuskegee Institute, it appears is told treatment will not be provided for the men. So they are fully briefed on the nature of this study.
Starting point is 01:01:21 And Eugene Dibble, the guy who is in charge of the hospital, the black hospital that's going to be working on this, he agrees because he thinks that working on this big project with the U.S. Public Health Service is going to help unlock federal funds later. And one of the reasons why the name the Tuskegee Syphilis study is controversial now is because it sort of implies that the Tuskegee Institute was part of the study from day one when, you know, we're pretty late in all of this when the Tuskegee Institute really starts to play an active role. And so it's really the U.S. Public Health Service study.
Starting point is 01:01:55 The Institute itself was not central in planning and coordinating and implementing this. It could also be called the Clark-Vandeler study. Yes. But so another thing, and this is really chilling, another thing we find out is that behind the scenes, the architects of the Tuskegee study are talking about how they need a black institution basically as cover because they know that the black population of Macon County is never going to go along with this if it's white people providing it to them. Understandably so.
Starting point is 01:02:24 Yes. For reasons relating to the very thing they're doing. So this is from a letter that one of the architects writes to another in 1933. He says, one thing is certain, the only way we're going to get postmortems is to have the demise take place in Dibble's hospital, that's the hospital on Tuskegee. When these colored folks are told Dr. Dibble is now a government doctor, they will have more confidence. I mean, this is like conspiracy theory shit, right?
Starting point is 01:02:49 Yeah. Yes, they understand. And it's funny too because you can also see how they're rationalizing. They're like, well, these subjects don't trust us. We need to obtain a black doctor to use as our puppet. But the people don't trust us because they're wrong. They don't understand what we're trying to do. And the fact that they don't trust us doesn't mean that we should modify our behavior, not
Starting point is 01:03:14 at all. Right. So it is 1933 and the study as we know it begins. This is now a study that is going to track black men with syphilis and not give them any treatment. One thing that's interesting, when you read shorter studies of this or summaries of this, oftentimes it's split into these two parts that there's these long descriptions of the origins of the study, everything we just talked about.
Starting point is 01:03:40 And then it'll have like one or two sentences and then it'll be like, in 1972, the downfall of the study. And you're like, well, there's 40 years like the opening of contact where we just fast forward through 40 years real quick. And then it's like, and then here we are. And so I was wondering about this. And the reason why is that for the sort of middle 40 years, when the study is just trucking along, it's essentially just a big logistics task that the only thing they're interested
Starting point is 01:04:11 in is the deaths of the men, right? So all they need to do is keep addresses of the men, every once in a while they'll go drop blood, they'll bring them in for physicals, but it's not clear sort of how many of the men got physicals, but they just need to sort of track the men and then once they die, convince their families to do autopsies. It wasn't even really an experiment, you know, that's giving it too much credit. I know. But so you're about to feel very weird.
Starting point is 01:04:34 The purpose of this section is to make you feel weird, because I've been feeling weird about it for like a month. Okay. So the person who is at the center of this logistical task is a black woman named Eunice Rivers. She is one of the earliest employees on the study, and she's the only person who was with the study for the entire time. She appears to be just like a genuinely good and competent and caring person.
Starting point is 01:05:01 Later on in one of the few interviews that she gave, this is with James Jones in Bad Blood in 1981. He asks her, you know, why didn't you ever go into medicine? Like you're clearly smart. Why didn't you ever want to be a doctor? And she says, I think if I had wanted to take medicine, I would have gone into medicine. I was never interested in medicine as such. I was interested in the person.
Starting point is 01:05:20 And it just never occurred to me that I wanted to be a doctor. I always felt that a nurse got closer to the patient than the doctor did. That was the way I felt about it. And so she became a nurse because she wanted to care for people. And one of the fascinating things about the study is that after it goes public, after the big downfall, it becomes this massive scandal. The men who were in the study, who were victims of her in some ways, right, that she had been lying to them for 40 years, they would still call her at night for advice.
Starting point is 01:05:50 They'd be like, oh, I sprained my ankle. What should I do? And she used to drive and pick them up and take them to Stiskegee. And oftentimes because they're in rural areas, it's like a one, two, three hour drive to get them. And so she would have these long car rides with them where she would get to know them. She eventually tells James Jones, she says, really and truly, when I was working with those people, that was the joy of my life.
Starting point is 01:06:13 Well, and then does it become a means of offering them other medical care? I mean, she justifies her participation in various ways over the years. One of the things she says is that she thought that she was protecting them from the racism of the doctors, that the doctors that were doing the physical examinations of these guys were basically like white assholes who were like really mean and really condescending to these rural sharecropper guys. Wow, really? And so she apparently would be in the room with them for the examinations and would be
Starting point is 01:06:45 like, hey, hey, hey, don't talk to him like that. And she saw herself as protecting the men from this sort of interpersonal on a day-to-day basis kind of shitty treatment without, of course, seeing the much broader structures of what the entire study was designed to do. Well, and then, yeah, and then that's a question, like, did she know the goal of the study? Oh, yeah. I mean, she knew. Okay.
Starting point is 01:07:08 There's stories of eventually in congressional testimony, there's a black doctor in Macon County who says she called him up and specifically prevented some of the men from getting treatment. He was going to help the guys with their syphilis and like tell them their diagnosis. And she was like, no, no, you can't do that. And there's like these sort of rural health projects where they would run buses to Birmingham, Alabama, where there's better medical care. And apparently one of the participants in the study was waiting in line for one of these buses that was going to take him to Birmingham.
Starting point is 01:07:38 And she was driving by and she happened to see him and she pulled him out of line. And she was like, no, no, no, no, you can't, you can't go there. That's not for you. She didn't tell him why. She was behaving with full commitment to the idea. She was fully briefed. However, there's also some evidence that she snuck some of the men into treatment. One of her students, because she used to teach at the university, says that she told the
Starting point is 01:08:01 class that she actually advised the men to go to Birmingham. Like some of them that she developed relationships with. She'd be like, look, I'm not supposed to tell you this, but like, there's a clinic in Birmingham. There's some evidence too that she deliberately lost some of the people, some of the men who like maybe were getting treatment. She would just go to the doctors and be like, whoops, I lost track of John. Yeah. So her ability to misplace some people is contingent on her ability to keep track of them generally.
Starting point is 01:08:30 Another piece of evidence for this is we have a letter from one of the doctors in the study. This is really fascinating. He suspects her of working behind his back. This is from his letter. He says, I began to doubt Nurse Rivers' conflicting loyalty to the project. Several times, I wondered whether she wears two hats, one of a public health nurse locally coordinating the study and one of a local Negro lady identifying with these local citizens of her race who've been exploited quote unquote for research purposes.
Starting point is 01:09:00 So it could be that this guy's just like a racist prick and assumes that she has dual loyalties because he's an asshole. Or it could have been that she actually was sort of pointing some of the guys away from the study and like subtly pushing them toward getting real treatment. And so we have evidence of both. We have evidence of her specifically denying treatment to patients and we have evidence of her maybe sneaking patients into treatment. Yeah.
Starting point is 01:09:25 I can imagine her also functioning from a perspective of like, this is going to happen with or without me. So like, I can be the one to do this job and do a good job and treat these men like human beings and maybe slip some of them, some of the real medicine sometimes. Yeah. And Vanessa Northington Gamble, this medical historian, she wrote a really insightful article about Nurse Rivers where, you know, of course she's pointing out that like, what was she supposed to do?
Starting point is 01:09:50 Right. She's the lowest level employee in the study. She's a woman. She's black. She's a nurse. There's all kinds of shit between doctors and nurses about sort of hierarchies and stuff. Did she even have the power to sort of be a whistleblower? Right?
Starting point is 01:10:04 Yeah. This is kind of a long excerpt, but I want to read it because I think it's really interesting. It's sort of, it mirrors like the weird conflictedness that I feel about Nurse Rivers. This is from Vanessa Northington Gamble's article about Nurse Rivers. Eunice Rivers, a modestly educated black nurse in the profoundly segregated rural Alabama of the 1940s, occupied the lowest rung of the medical hierarchy. Hers was an arrow and a nurse was a handmaiden trained to assist not to question the physician and a black nurse occupied an even lower professional stratum than a white one.
Starting point is 01:10:34 But Rivers came to shoulder the burden of America's most infamous instance of medical research abuse. She has been accused of retaining men in an experiment that she knew could only harm them. But all her spontaneous statements focus proudly upon the care and protection that she provided them. When she has asked about the study's details, Rivers' responses are in co-aid and echoed a can't with which the Public Health Service researchers have agreed to defend themselves,
Starting point is 01:10:58 which suggests that Rivers never understood the science behind the study. Her crime was believing the Public Health Service doctors who told her that theirs was beneficent work. However, I can't completely excuse her as much as I long to. I wish that she had asked more questions. Once the question of whether the study was ethical was openly raised in 1965, I wish that she had demanded reassurance on that point or left the study. Instead, she compounded her error by her continued blind faith in the researchers she had been
Starting point is 01:11:25 trained to serve. And so the closest thing to a conclusion that I can come to is just like she seems like a really nice lady who did something really bad. Yes, and history is full of nice ladies who did bad things. Yes. She's sort of, I mean, maybe this is totally, maybe this is totally unfair, but she kind of reminds me of like a Cato Kalin figure who under sort of different circumstances, you know, she would have lived like a morally unblemished life, right, that it seems like
Starting point is 01:11:54 she was caring for individuals. That seems like her guiding principle throughout her life was caring for sick people. And she just sort of got drowned by these circumstances that were just much larger than her, that she couldn't see all the context. She couldn't see the way that she was playing into it. And that doesn't mean it's defensible, but it's also like she's not the one who was like, I shall prove this eugenic assumption, please. Like, it's just complicated.
Starting point is 01:12:18 Right. We can never know her mind in terms of like, was she a true believer the whole time? She stopped being a true believer, but then she was like, well, this is going to go forward with her without me. So like, I can mitigate this and that was how she went about doing it. Like, we don't know. Also. Yeah.
Starting point is 01:12:36 So that's her. Now that we feel weird, we're going to end with a twist. Okay. And we're going to end with weirdness and then a twist. It's like deep fried ice cream. Yeah. I was going to say it's like a 1970s Italian horror movie. Yeah.
Starting point is 01:12:50 Oh, either. So do you want to hear the third explanation for the origin of the Tuskegee syphilis study? I do. The little known third explanation. Is it aliens? It is capitalism. Oh, yeah. Because what a researcher finds out in 1995 is that one thing I didn't mention about
Starting point is 01:13:11 syphilis is that it's very hard to keep alive outside of a human body. And if you want to make diagnostic tests for syphilis, you need a lot of blood that is infected with syphilis. And so what the study did was it provided the public health service with a steady, reliable supply of syphilis infected blood. Oh, no. It's a little syphilis farm. Yes.
Starting point is 01:13:41 So one of the very strange market forces that was going on at the time was between 1930 and 1960, the demand for syphilis tests went from 2 million a year to 12 million a year. Yeah. I did not know this, that in a lot of states to get a marriage license, you had to test negative for syphilis. Oh, is that why they did a blood test? Is that why when you're watching like Splash or something, people are getting a blood test before they get married?
Starting point is 01:14:07 I guess. Wow. So in the face of this massive demand, the public health service was galloping to develop a new diagnostic test because if they had a diagnostic test, they could patent it and they could farm it out and they could make money off of it. And so what the study did was it just gave them a shitload of syphilis blood that they could use for a diagnostic test and they did in fact develop a new diagnostic test. And then how much money did they make off of it and have reparations been paid to the
Starting point is 01:14:41 survivors of these experiments, I'm curious. I mean, absolutely not. Okay. I want to be careful here because I've read the articles that this third explanation of the origin study is based on and the evidence that this was on their minds at the beginning is pretty slim. Right. The only evidence that they had this in mind from day one is that the experimenters contract
Starting point is 01:15:08 with the Alabama Public Health Department includes a clause that any tests that are developed out of the study, the intellectual property is owned by the U.S. Public Health Service. But it's not clear to me if that's just like a standard clause that goes in one of these contracts and all of the correspondence about developing this test and how important the blood is to developing this test is from the late 1930s. So it's actually possible that Clark and Vondeler didn't really have this in mind, but it was only later that people at the Public Health Service were like, hey, we have all this blood, we can use it.
Starting point is 01:15:41 So it's clear that it was used to make a new diagnostic test, however. Like that is pretty well established, but it's not clear if that was one of the motivations at the beginning, even though you hear people say that this was one of the motivations in the early 1930s. Well, and I think it's reasonable to the way these things tend to progress in the world that people can start off having better intentions or at least feeling that they have good intentions and then those intentions can sort of roll around as a sticky, dusty thing. And then over time, you know, Averus plays a larger and larger role.
Starting point is 01:16:15 It becomes more and more profitable. Intentions and the people carrying them out change over time. Right. So I mean, I feel like in this case, it's not a it was capitalism all a long story. It's a it was racism first and then capitalism. Oh, yeah. Well, that's, you know, that combination certainly comes up a lot too. This is not the first time we've seen that. Yes. But so that is where we are going to leave it for today.
Starting point is 01:16:40 What are we going to talk about next time? So next time, the twist is going to be the development of penicillin. Oh, boy, I love the story of penicillin is someone who often ends up with moldy dishes in my room. But so that is where we're going to leave it. Stay tuned next time for more odious ethics. It's all going to get more depressing. And after this, I really want to do an episode about baby animals or something. I need to do one.
Starting point is 01:17:09 And they're all they're all lying together on a big pillow. Yes, exactly. And nobody is pumping them for syphilis blood. Oh, you ruined it.

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