 I'm going to interrupt to introduce Susan reverby. It's an honor and a delight to do that. Professor Susan reverby is the Marion Butler McClain professor in the history of ideas. Merita and professor of women's and gender studies at Wellesley College and an historian of American women medicine and nursing. The first higher at Wellesley in women's studies was back in 1982. And this was a professor as reverby. She was taught at the college she taught at the college for about three decades. Susan reverby is the co editor of America's working women a documentary history of a book entitled health care in America essays and social history. Another book entitled gender domains beyond the public and private in women's history. She is also the editor of the history of American nursing, which is a 32 volume reprint series, and her prize winning book was called ordered to care the dilemma of American nursing. It's still considered one of the major overview histories of American nursing. Reverend reverby has also published two books, and what is referred to as the infamous Tuskegee syphilis study from 1932 to 1972, the longest running non therapeutic research study in US history. The US public health service, and nearly 600 African American men in the county surrounding Tuskegee Alabama. The men thought they were being treated rather than being studied for what they thought was bad blood. The study has become a central metaphor for distrust of the health care system. And as the key example of unethical research. Susan's edited books relating to the Tuskegee study include Tuskegee truths, rethinking the Tuskegee syphilis study, and then a later book, examining Tuskegee, the infamous syphilis study and its legacy. I could go on and on about just old amazing performances and work and background and training. She's currently the affirmative action officer of the American Civil Liberties Union of Massachusetts served as its board of on its board of directors, since 1998. The title of Susan reverby's talk today is escaping melodrama, how to think or not think about the US public health studies in Tuskegee and in Guatemala. It's a pleasure to welcome Susan reverby. Thank you very much. Okay, I'm going to do the share screen thing so I can get my slides up for you. I'll be right with you. Hold on. Share. University of Chicago. Okay, hold on. Over. And slideshow play from start. Okay. All set. You can see it. Okay, great. Thank you very much for this invitation. I'm really only sorry that I can't physically be there so we could all go out afterward and get to know each other a little bit better so I appreciate the zoom up opportunity nevertheless. So, here we go. The vaccine rollout for COVID-19 began earlier this year, concerned for what was being labeled vaccine hesitancy started to fill the commentaries and news stories by the thousands. Much of it focused at first not on white Republicans in the so called red states, but on the seeming irony of those concerns in African American communities, most hard hit with illness and deaths in this pandemic. For once history seemed to be the explanation for these worries. In some ways of course this made sense. After all, when confronted with an individual patients medical concerns, healthcare practitioners take a history with relevant questions to come in to a diagnosis and propose therapies. What are the symptoms. When did they start. How are they manifested when black Americans present their medical concerns as a population. However, the wrong questions are often asked, and it adequate history has taken, and the diagnosis in the treatment of a man often fails. COVID proof this yet again. But as Voltaire noted in the 18th century, we owe respect to the living to the dead, we only owe the truth. I therefore want to discuss from my own experiences how the preconceived assumptions of melodramatic history and I'll explain that in a minute that link medical research to racial topics makes our truth seeking to paraphrase and change Voltaire a bit. We cannot provide respect to the living. If we do not provide truth to the dead. Some of my scholarship as Dr. Siegler has pointed out has focused on two troubling studies in the American medical research history, the US Public Health Service study of untreated syphilis in the male Negro, better known as the Tuskegee syphilis study 1932 to 72 for which then President Clinton apologized in 1997 so this is the edited book of documents about the study and then this is the book I actually wrote about how to think about the study and what happened. Other work focuses on something called the US Public Health Inoculation sexually transmitted diseases studies in Guatemala that took place between 1942 and 48 that received worldwide attention in 2010 and I'll explain this in a minute. And this is the cover of the major paper in Guatemala City in 2010, a US government apology to Guatemala here's the story and the times here's the 200 page report from the President's bioethics commission in September 2011. Each of these studies involve the powerful US government focused on primarily poor and rural African American men in one case, and Guatemala and sex workers mental patients soldiers and prisoners in the other. Each entailed deception lack of any serious consenting processes and life threatening sexually transmitted infections. Buddy and Tuskegee as you know went on for four decades as hundreds of African American men without the disease for watched but not supposed to be treated so this is a photo of a woman in Eunice Rivers I can discuss later who's the go between the men in the public health service, handing out a packet of aspirins to one of the men in the study. This is rivers handing out vitamin tonics and aspirins in one of the cotton fields, the diagnostic spinal taps were done as a plan were promised that they were being given a special treatment and then the term bad blood was used but here's a poster from the New York state New York City actually prisons that I found that was put up in the 30s that used that said bad blood means it is simplest. The study in Guatemala extended for two years recruited nearly 1500 men and women. Here's my report on that. Just over 2000 according to the Guatemalan governments report and then followed infecting, which Tuskegee did not I'll talk about that in a second with syphilis gonorrhea and shankroyd and then not treating the majority of them after the infecting. The study of course conjures up almost primordial and powerful fears of our lack of control over our own bodies. The dangers of those with great power, the terror trusting physician scientists to respond with what many seeing as close to medical torture. The racism of treating people of color as the other, both in our own south and in the global south so here's a quickie comparison. Let me just move this out of the way here hold on a second. Okay, so Guatemala people are being given ST eyes. Not all the subjects are given penicillin even if they invents infection. Not everyone became infected we're not sure about the numbers the study was kept secret but the records are in john cutler's archives I'll describe this in a sec and in Tuskegee, the men already had syphilis were mostly in late latency. The men were to be kept from treatment of not always successfully and there were published reports about this more about a 13 altogether actually the manner referred to as volunteers, for example. These research projects has physical procedures that are pretty horrific and pornographic almost diagnostic spinal taps described as special treatment in Tuskegee, and the use of sex workers spinal punctures and the abrading of men's penises and women's services to deliver the disease and in Guatemala. Now historian finds the facts for these studies in the multiple unusual ways reading primary materials in archives interviews statistical data, etc. We often don't know what meaning we or others will make of the material, once we have it for a course in part, it depends on what kind of narrative we create what existing tropes we struggle for or against, and the kinds of facts we both find and explain. None of this however has ever been easy, especially in the face of strongly is about what the stories are supposed to be about, and the seeming obvious bioethical lessons to be derived. I'm also more than aware as a white northern woman analyzing histories in which racism and or imperialism undergird the studies I'm researching. It's easy to make them central to my analysis, even when I try and make that ways they work complex and nuanced. If I don't name racism and imperialism over and over as some kind of mantra. It's assumed I'm either callous or thoughtless from the left. Hold on, my goodness not moving to sec. Okay, there we go. This is me getting into a fight with Amy Goodman on democracy now. I've written to them at all the right things I'm an ideologue I don't have a slide of the veiled death threat I got on my Amazon author page. Given rumors and other explanations to my efforts require acknowledging and knowing what the police are already as even I try and say what else might be known. And in the face of the media onslaught over these horrific issues the difficulties of remaining the careful thoughtful academic. And just to say things of course are more complex became even harder. And now in the face of the use of at least the study in Tuskegee to explain what's happening with vaccines, it's become even more difficult. The best example of the way Tuskegee for example has entered popular culture can be seen on these two Saturday Night Live skits. The first one was in 2006 and involved Kenan Thompson and you Laurie, which the white doctor comes in and offers the patient help for his broken leg and Laurie and Thompson look at each other and start yelling. It's Tuskegee Tuskegee over and over again. In this past spring in 2000 actor Daniel Kahlua was trying to give in his family to take the covert vaccine let me see if my didn't come up again darned. So he basically is talking to just walk you through this one. He's talking to his family it's a kind of pretend quiz show and he says to his to a cousin why won't you do with this and he's and she says well doesn't have syphilis in it and he said well why would it have syphilis in it and she says. Tuskegee and he said but that was a long time ago and then the next cousin says, well I'm not going to do it if unless white people do it and he says well I don't trust white people. And then and then he says well why don't you trust white people and the cousin says Tuskegee. So you see it over and over again being used in this kind of circumstance. How then was it possible to discuss this and how should I have tried. I found some comfort and thinking through the problems of melodramas spectacles and tragedies as a way to understand my experiences. I found particularly useful this wonderful quote from the late film director Sydney Lumet. He said in a well written drama, the story comes out of the characters, the characters in a well written melodrama come out of the story that is in a melodrama already know what's going to happen the characters just fill in the blanks but when you try to write history of course you want to be writing a drama where our historical figures create the story of course in historical context, not melodramas where we already know the story and the characters just fill in. When it comes to public discussions and fictional representations of racism and imperialism, especially in the context of medical research, however, it's often the melodrama where the story drives the characters. Film critic Linda Williams provides a guide here, I thought, in our analysis of the melodramas of race that gets seen in America in both actual experiences in books plays and films or her book was called playing the race card came out about 10 or 15 years ago. The melodrama she says are embedded in our national consciousness and they're almost impossible to escape. Williams contends that these kinds of simple spectacles and tragedies performed in melodramatic tones are the ways we talk view and organize our thinking about race, even when we think we're not doing it and even when we want to escape it, for she suggests that the cross racial recognition of virtue arises and the demand for citizenship becomes founded, not on an understanding of rights, but on victimhood. She then explores the limitations of this approach to the body politic. I first realized that this kind of concept of melodrama be a problem when I began to lecture on the initial work I was doing on the study and Tuskegee nearly 25 years ago. I was founded with the belief and this is the major misbelief about the study that the men in the study were given syphus by the US public health service, not the disease already and note for example in the, and the SNL clip when the cousin says does the vaccine have syphilis in it, that idea has now traveled into the assumption that you're being given a disease. The belief is enforced of course when there's an image of the blood draws now you can tell by looking at this picture that the physician has his hand on the syringe and he's pulling it out he's doing a blood draw. But I'll show you another picture in a minute where it gets cropped and you can't tell what's going on so even if it's this hand or here's nurse rivers doing it as well. The assumption is that they're being given the, the. to understand why this belief about infecting still circulates is to accept that the study never was from its very first public exposure in 1972, just an historical event or even just a bioethics tale. It became almost an American allegory, a way to explain the dangers and fears that lurk every time a patient or subject places their lives and someone else's hands whether for clinical care or research trial. I think also to speak about racism without directly naming it. There's a reason some of the earliest horror stories and films focused on the dangers of unchecked medical madness and sexualized power doctors over the innocent so think about the cabinet Dr Kilgari the island of lost souls or Frankenstein. The assumption of infecting with a potentially deadly disease in this study fits these old tropes. The monster doctors are infecting or endangering the vulnerable is a powerful tale. Even if failing to treat and deception, as was done in Tuskegee, I have argued, is in some ways even more normative, and in many ways more horrible and even more racist for its familiarity of people inability to get appropriate care. For the study in Tuskegee, along with slavery and lynching becomes yet another example of what happens when African Americans are not valued as rights bearing citizens. So this is just a I love this picture of three of the men in the study it's just such a great 50s picture. And here's another group of the men who were in the study. In telling the story I relied upon interviews statistical data from immense medical records that opened up and a rereading of the correspondence to argue that many actually escaped to some treatment, especially if they survived into the antibiotic era. In this study, and before its public exposure, the PHS researchers had to admit to one another it had become a study of under treated, not untreated symbolism. My historical county tried to show that even Mr Herman Shaw, there's not sure the man is Mr Shaw at the apology in 1997, got himself to treatment in the 1950s and here are five of the men who were there were six of them still alive in 1997 when the apology in Washington and all of the men have now passed and all of their wives and now pass. The story of course of under treatment and the possibility of escape however cannot balance against the revulsion and nor should it in some ways toward a government that no only let its citizens be harmed and even wrote about it in 13 published articles over the decades. This and argument is a way we can rethink the meaning of the study as a metaphor for genocide, and the ways the research community might come to remember that subjects can undermine their quote scientific results in hidden ways. Such an understanding is difficult to counter the powerful melodrama or the simple ease of a simple victim story that's become the basis for federal rulemaking online ethics courses, and now really part of the national conversation on mistrust. The final of trying to escape a kind of medical melodrama became even clearer as the news of the Guatemala study became a worldwide phenomena. I was in the archives at the University of Pittsburgh in 2003 to examine the papers of a former surgeon general, and was told there were papers there of john C cutler, who had taught at Pitt for decades so this is what cutler look like in 1946. The father was mostly at at all at the end of a long list of names on several of the articles written about the simplest study in Tuskegee, where he had worked in the 50s, a minor character in the story, mostly remembered because with a pinched face, weird syntax and piercing eyes, he continued to defend the study as appropriate science and good for African Americans on several documentaries made 20 years after the study was ended so here I think this one will run. In 1992 in a film called deadly deception, asked whether he thinks the study that we should have apologized and whether or not the study should have ended. My regret is, in terms of study, I have not as a scientist and say, I would like to see an ideal scientific study but we're dealing with human beings over a long period of time. And this is impossible. So this was stunning and when we saw this film in 1992 it's actually the beginning of the organizing to get the federal. This was in 94 when we saw the film and we organize for the next three years to get Clinton to apologize. So I thought oh here's cutler's papers maybe I'll find some more stuff on Tuskegee and I opened his papers hoping perhaps to find out more. Instead, I found thousands of pages, laboratory reports, experimental records and photographs with the cover that said here's the cover page. Experimental studies on human inoculation and syphilis gonorrhea gonorrhea and Shangrois. And then they were all of these photos as example when I saw them they were, you know, they didn't have the black thing that was done by the public, the government, and that's cutler, you know, in Guatemala. The papers were first studied as far as I knew no one had ever heard of remember Tuskegee had 13 publications that took place in Guatemala between 46 and 48 when Cutler was only 31 years old and just four years out of medical school. Remember I had spent years at this point explaining that no one was given syphilis in Tuskegee and here was cutler and inoculation. As I read the story, it became increasingly horrific. Here are the key facts I could glean from Cutler's report and the extensive correspondence left in his papers. The studies in Guatemala were approved by a syphilis section of the National Research Council as a grant to NIH and to the Guatemalan government. And this was designed to obtain information about methods of prophylaxis against syphilis, increase understanding of the effects of penicillin, and to assist in a better understanding of false positive serological tests. So, remember this is 1948 we learned in 1943 that syphilis early syphilis can be cured by penicillin we still medicine is a new drug it's so carefully service that in fact when patients were given it sometimes their, their urine was then titrated and then we recaptured the penicillin. So we didn't know and so what he was trying to figure out an important question could penicillin work as a prophylaxis can you give it to someone a little bit like a plan B right they've had unprotected sex they haven't had an infection yet, but you give them this drug and then wow they never get sick. So it's a good scientific question. I was asking the question was how do you do that research, right with an STD. So, unlike Tuskegee this study of course involved infecting. One of the reasons Guatemala was chosen was with an STD. How do you transmit in Guatemala prostitution was legal, and even more importantly inmates in the federal penitentiary in Guatemala city were allowed to bring sex workers into the prison for their services. There was a man named Juan Funes who was his co investigator and the head of the Guatemala BD division as STIs with him called recruited sex workers already had STIs or they inoculated them with them and then they used us taxpayer dollars to pay these women to be with the prisoners. Despite this and even adding alcohol to mimic what Cutler called and then I called my paper normal exposure. The inmates were posted many blood draws that followed and refused proved recalcitrant. Cutler and Funes began to do blood testing and orphanage. After that they moved on to the country's only mental asylum and army barracks. Here they began to make the inoculum from infected rabbits and street strains. And to inoculate the inmates and soldiers in a variety of ways. Skin contact, direct injection, scarification and abrasion, systemal punctures. The details were pretty horrendous as were the photos and here's the irony of this taken by at least Cutler, a Wellesley College alumna of all the women's colleges in all the world she ended up at mine. This is from the 1930s and Cutler spouse so here are some pictures this is where they're measuring the shanker on this man's penis and here's a picture of measuring the shanker on the arm. At the asylum, they offered the asylum director didn't really know what was going on. Dynantin for the epileptics who are a large part of the population, they also bought and this really sounds like you know, 15 beads, and then for Manhattan. A refrigerator for their biologics emotion picture projected that supplied the soul recreation for the inmates metal cups plates and forks to supplement the completely inadequate supply. Individual subjects were offered cigarettes and a tire packet for inoculation blood draws or spinal taps and the single cigarette for clinical observations here's a good example of one of the medical records the circle things and handwriting is mine so they clarified the man's penis they use the nickels rabbit strain of the disease they have dripped the inoculum onto a pledge that they put on the man's penis for an hour and a half so three different applications over the period of from 816 to 905 p.m. And then they removed the pledge lit at 944. The various specialist Robert Courtney who had done prison malaria studies visited the project in February 47 in reporting to Cutler after he returned to the state to explain that he had brought surgeon general Thomas parent up to date, and quote with a Mary twinkle that came into his eye, parents said you know, we couldn't do such an experiment in this country, you know, and it may be referring mostly to the use of sex workers were not sure, but it gives you a sense of their sense they could go somewhere else and do this. And of course they were on an edge for RC Arnold who supervised Cutler wrote him and said, I am a bit in fact more than a bit leery of the experiment with the insane people they can't give consent don't know what's going on and some goody organization got into the work they would raise a lot of smoke. So I think the soldiers would be best or the prisoners can they can give consent but of course they never got consent they're not they didn't even ask for it. The numbers are really depends on. Because I'm tight on the. The numbers are really, you know, kind of wonky, we think this is the work that was done by a STD specialist from Johns Hopkins who worked for the bio bioethics commission that the intentional exposure was at least 1308 people diagnostic testing obviously was in the thousands and there were 82 deaths during the time period but there's no evidence that any of those deaths were caused by the experiments but you know you can imagine how that story goes on. What then should the historian do with this without a research team drained trained in bio stats, which both the CDC and the presidential commission of bioethics had and they spent months on this. I made a decision not to try to analyze the thousands of pages of very messy data. It was 2003 and I still had the Tuskegee data which had just become available to code, which I then did, and the book would take another five years to finish. This is a study that was claimed in his written report and his correspondence this has been a study to explore in part the use of penicillin and a drug called or this more farsan as a prophylaxis. That's coming to the material with my knowledge of the study in Tuskegee and the idea that this study while involved in affecting also appeared to be one of treating right which is very different than to see. The analysis of the statistical materials it was impossible to know if all the subject had or had not been treated. Even after all the research the bioethics commission could not determine how many of the subjects actually became infected even, although they believe slightly more than half of those are not related were left untreated so there's some of their data that's all in the report. And here's what they said at the end of the report, I added the underlying the commission did not attempt to identify how many people were clinically infected, or how many people received adequate treatment as a result the database focuses on the number of minerals exposed to, rather than infected with an STD. As a medical historian, I was also aware of the many inoculation studies that existed that historians already knew about. I kept thinking about historian Gert Rieger, may he rest in peace we just lost him this last year. Questions about how many horror stories, did we really need to keep uncovering. I was of course horrified by the Guatemala materials and thought they would fit into the book on Tuskegee, but as a way to explain how difficult was to actually infect people given the biology of the disease. I wanted to discuss the Guatemala materials with others. However, when I finally finished the last edits on the book. The Guatemala material seemed too complicated and too unfresh in my mind and so since I had been forced to cut 100 pages out of the book so in June of night 2009. The book on Tuskegee now done and my teaching response at least done for the year. I returned to the Pittsburgh archives and we did the research to be clear of what I had really found. And so in March of 2010 to write the Guatemala material up to plan to give it as a paper at the American Association of the history of medicine that may. And here's the important part, I shared it with David sensor, the former CDC director shown here on the right that's a picture of him during the Tuskegee thing and I'll tell that story in a minute. I'm the former CDC director with whom I had become friends with as I interviewed him about Tuskegee. David had shared a meeting in 1969 considered a crucial turning point in the Tuskegee story and had allowed the study to go forward, and the men not to be treated. SDS the Students for Democratic Society which I had belonged in college even burned him in effigy outside the CDC offices after the story of Tuskegee broke in 72. And I probably would have been there burning him if I had been in Atlanta. This time I think he was determined to do it right, and to protect his former organization so with sensor who asked if he could give my yet unpublished paper. And I asked him to read it because I'm not a physician and as historians and medicine will tell you if you get one medical thing wrong in a paper the doctors jump all over you. So I always have a doctor check to make sure I didn't make some medical mistake and so David was my aging syphilologist he was in his 80s and I thought he could you know read it and make sure I didn't make any medical errors. And he's the one who said oh my God, you've got to let me share this with the CDC. So what happened is it went up the chain of command in the summer of 2010 through the CDC up to the White House. And it went through these other players. So this is Harold Jaffe on the left who was the director of CDC for science. This is John Douglas on the bottom he was the head of the STD division and that's Zika manual the brother of your former mayor in Chicago, but who was then the point person for Obama there. So I agreed that we would put my unpublished paper up on my college website and that the government would issue an apology. So I put it on the on the college website rather than on my book website so I had the authority of the college behind me and it didn't appear like I was like shilling a book and also because there was nothing about bottom all in the Tuskegee books that seems sort of nuts. Most historians are trained not to write what if claims but there are several worth considering now since I have been criticized in print for not releasing the material immediately in 2003. I didn't have any contact with David sensor in 2003 and it took several years for that friendship to build up so we could trust one another. So the story had just begun to write the book on Tuskegee, though the editor book was out and even if I had written the Guatemala material up in 2003 I didn't have the authority I think finishing the Tuskegee book would give me. Nor analysis that wouldn't have just made this one more horror story, and I had no context at CDC. So the story had legs in 2010 because of the apology from the US government, not just what I found. Without those contacts, I doubt it would have been picked up and furthermore Zika manual, as I said Obama's point person on healthcare had written on the exploitation of subjects was involved in proposals to chain regulations about human subject protection just the gathering steam, and he knew who might work I think he pushed for the apology and thought about how it could be used. Finally, consider that what we don't know whether or not during the Bush administration anyone would have taken seriously the need to apologize for this or any bioethical commission investigation, even if they've been able to get anyone to pay attention. So it leaves us with a version of if an historian finds something in the archives and shouts out will somebody listen. Do we have to have responsibly to blog everything substantial we find and hope it gets picked up. I have a governmental official on speed dial. What if I tried to publish this immediately, would it have mattered. And then of course how we ever know what I wasn't prepared for a course and although I should have been was the melodrama that followed by September I knew that both secretaries Clinton and Sebelius would be apologizing, and that President Obama would be calling President Cologne in Guatemala. And Cologne invoked the terms first used against the Armenian genocide and called the studies crimes against humanity. The President also asked his Commission of bioethical issues to explore the history as you know and other human subject protect protections. I was stunned that it had taken us years to get the apology for the study in Tuskegee and this happened frankly in a matter of months. I still wasn't sure it would make much coverage so you sure don't want to go to Las Vegas with me because I mostly don't know how to bet properly. What I had not been told, however, was that the government had given the story to Robert Bezel then NBC science correspondent the night before and embargoed it. I agreed to post my un copy edited article on my faculty webpage at nine o'clock on October 1. The cell already knew about it had reported it on MSNBC by 902 by 905 he called me on my cell phone and by 930. I was like pajamas because there was an NBC news crew in my living room, and then the world, entire media started to call because like a thing that we've given my mission my cell phone as the contact, not the PR agent person at Wellesley because nobody thought about this. So quickly it became very clear the press wanted to know one how this happened and how did I feel when I found it and how monstrous really was color. I had a doctor who had run the studies in Guatemala and which of course, which one was worse. I had I was asked about literally the study into Tuskegee or Guatemala and you can see how they get connected so this was a sort of a TV show that was done in Australia and I got interview so here's the picture on the left. This is the blood draw in Tuskegee but you can see you couldn't really tell what's going on here. So here is in Guatemala. That's one of the I was in these two pictures of is of me looking very hot and bothered because it was like 95 degrees and we were in the cemetery in Tuskegee when this guy interviewed me. But you can see again how they get linked even by the title infected explanation point right. So how did I feel what kind of weird question I thought. It felt a little bit like kind of when did you stop being your wife kind of question when I said I was shocked at this kind of study had gone on one reporter wrote that I was naive and didn't understand how normative this was for medicine. If I said it was not surprised and I sound as if I was callous and thoughtless. Others make me sound I love this one is if I was just some girl researcher would accidentally found this material that was being hidden rather than a scholar who knew what she was looking at, although obviously not for his current news value and could write it up in a historically nuanced manner. No one seems to remember my favorite quote from Pester chance favors the prepared mind right wasn't color a Nazi doctor like mental I got asked who had found refuge in in Latin America I'm not the only one who thought this this was a cartoon in Prince Libre in Guatemala city so there's Uncle Sam looking in the mirror and you know mangal was looking back in it. I tried really hard to put color and context the stuff the ways in which is higher ups we're not so sure this was acceptable research, but it's still let it go on. I tried to explain why the public health service was so concerned about syphilis and the search for a chemical prophylaxis to prevent infection after exposure. The melodrama, however, provided a much more powerful story. Cutler became a Nazi doctor, although there was indeed some worrying Guatemala that there were many other issues to worry about so I love this one it's Mrs. It's interesting to President clone and the Guatemala man says to him. She, what about the Cold War the paramilitary groups that demand for drugs and the hate towards immigrants. In other words we've got lots of other things to worry about in relationship to you. Guatemala is in the story became hopeless and pure victims of the once it became clear, even when I tried to explain it. I couldn't walk into the federal penitentiary the country's only mental hospital and army barracks in Guatemala city in 1946 without permission that the Guatemalan government was deeply involved in it just as the physicians in Tuskegee Institute had been with that study. Obviously there's an enormous power differential. Why governments are professional medical professionals might agree to such a study in their under resourced areas, never gets much attention to certainly not as interesting as the melodrama. The internal racism within Guatemala also got very little initial play except among Guatemalan scholars since many of the people who were in the prisons or were soldiers were mine. The story that October then dependent on who wrote it and where in the world it went, and it played out with all the melodrama of the bodily physical violations the US use of US taxpayer dollars to affect sex workers and send them in a prison to pay sex the power of the US government of global South country innocent victims, the heart of the use of medical research authority at the same time as the US was prosecuting Nazi doctors at Nuremberg, and the sexual nature of it all. And the emotions of the responses of the government secretaries my own findings and those of the people in Guatemala galvanize the press coverage that went across the world within a week and then I was fielding questions, everyone from the BBC to the Chinese news agency to Al Jazeera. My favorite was when Al Jazeera said to me, this is what the United States does and thank God and quick on my feet and I said no this is what a democracy does when it makes a mistake it apologizes. These three filmmakers made contact that's still going on and for tort lawyers. Quickly the heads of the CDC and the NIH also sent its short article out to the Journal the American Medical Association published published that denounce what had happened explain the protections now in place don't worry this will never happen again right and try to assure everyone. That's the melodrama of a bad doctor a different time and innocent victims played out against the apology for wrongdoing set another country, and another time so there's the federal response page here's the. There were two reports in the bioethics Commission this one and then another one called moral science. The commission report made clear, obviously they had more money and time to do this the institutional support that had made the study possible, an issue to claim a blame worthiness against the doctors who ran it, even though they struggled not to tell the story as a melodrama news reports picked up on the number of people who died, even if not because of the research mind you, and the vividness of the case examples, as you might expect the lawyers came next. The issues against the government were dismissed on technicalities but another lawsuit that I am actually this historical con consultant for against Johns Hopkins Rockefeller University whose faculty members supported and helped organize the study and the drug company that provided the penicillin is still wending its way through the courts. In conclusion, the scholarly literature on race and melodrama warns us that it will be very difficult ever to escape such a way of telling the story, and my own struggles back up this analysis, and now with cove it to ski to has come back to our imaginations to explain the fears of African Americans. But my focusing again just on the melodrama we lose sight of other important historical steps and I want to think about the historical lessons of Tuskegee and just think about this for a minute. If there had been the promise 40 acres and a mule after the Civil War the men's families might not have stayed in Tuskegee and had other economic choices that would have led them off the land. If they had access to decent health insurance, they would not have been as vulnerable to the offers of free care. If there have been more sex education condoms available and public health, there will not have been so much syphilis. If racist assumptions about biological differences had an existing study would not have been done in the first place. And since both black doctors and nurses were central to sustaining the study. We need to remember that just having racially concordant patients health care providers is not enough to protect patients and subjects. So I accept in conclusion that only the first steps to change requires that there be acknowledgement that something horrible has happened that's what an apology does. I did many of the media interviews to remind people of that, that it acknowledges an error when you make an apology but it doesn't predict or control future behavior. I made an effort to explain the differences between what happened in Tuskegee and Guatemala, even if the seemingly same bad guy doctor linked them and I absolutely refused to vote on which one was worse. In the end, I think the melodrama reminds us of the horror of the stories in part I think to motivate us to actually begin to think and take action. It cannot stop there in the face of quote moral confusion and disarray literary critic Linda Williams concludes melodrama is organized around a paradoxical quest for full articulation of truth and virtue at precisely at that moment when truth and virtue are the most and yet the stories of these studies in Tuskegee and Guatemala may not seem vexed at all to most to hear about them through rumor, quick media accounts, the emotion of the horrible and a warrant and of course on Saturday night by the melodrama these two studies helps us to begin to focus our concerns but whether we just weep or make change, I think, depends on how we understand why these studies happened in the first place, and how much the emotion motivates us toward complex changes in social policy, not just in bringing our hands moaning over simple evil by seemingly bad men and making up more procedural regulations. Melodrama makes for emotive but ultimately limited theater I think and even for a performative apologies. Similarly, I want to conclude melodramatic history may get us to pay attention but it is ultimately a poor guy to making social policy and to achieving justice, only the real drama can do that. Thank you. Okay, stop share. Okay, I'm back. So, I wanted to, on behalf of Mark and thank you that was a superb talk, and I think that you did what I most hoped you would do would be not only to go over the context but the implications and how history really matters. What do you do, and your discoveries and I just have to, I love, I absolutely love, love, love the idea that they said just some girl researcher. Oh yeah, oh yeah, it's happening all my life. No, but when you went back after years after doing one book understanding the implications understanding that and going back to do the kind of careful scrutiny that historians do right. It's just a guessing game, it's search as much as any other basic science and that's right. Exactly. Also, I am totally, I'm going to open it up for questions because I don't work. I have a love fest all afternoon. Whoever just put your hand up like in that little hand up box it just makes it easier. I'm happy for anybody to field questions or if anything's in the chat. I want to make one comment before we do that. So, one of the things I didn't, I didn't add, but I think it's important, my colleague Evelyn Hamets and I wrote a piece about this. So, a lot of people are saying the word I mean I do a Google alert on Tuskegee and so I just, you know, suddenly this over the last two years has just been a ton of it. And mostly it's a lot of journalists are writing really quickly it's because of Tuskegee and I have been arguing that of course it's not that if people even use the term like in the SNL thing. It's a code for racism, it's a way to say racism without actually saying it's not that people know anything about it or even understand it it's just that it's a way to speak. And it's more likely what happened to them through their entire lives or what happened to their grandmother last week when they went to the hospital that really matters, not memory of some study in the past so I think it's really important and I think that the problem with focusing on that history doesn't really take into account the structural problems and what's going on now and so I think it's a way to avoid, avoid really thinking through the hard stuff, which is how do we treat what kind of access to people have I mean, I once wrote a piece during the debate on the Affordable Care Act in which I argued that if the men because they were using Tuskegee to argue against the Affordable Care Act by saying, see this is what happens when the government gets involved in your health care. And I wrote back and said no the study would never have happened if the men had had national health insurance, then they wouldn't have been vulnerable to the offer of free care. So it's a study in what happens when you don't have insurance that's what it's really about. And you know but here but here's the important point that you brought up and I think that's really the essence of this. Melodrama is very powerful and in a world where we are in a world of popularity, Facebook, selling things that that is so much more, I mean that's so much more motivating than the real nuance of the fact that when the study was started, there were things we didn't know and there's a lot of stuff where, you know, in some ways, almost think about it like a legal case. Okay, let's say I was that person. Where would the branch point be that I would have made a difference. I would have done a different thing in the middle of the study that absolutely changed. And remember this is the period where you don't do much, you know, I mean, so my dad who was a solo practicing cardiologist in upstate New York but he trained at Michael Reese in Chicago that's where he did his cardiology internship. And I know it's not there anymore but in any event he did a study on that on the use of penicillin and bacterial endocarditis which at that point was a death sentence so I said so dad, what kind of informed consent, did you ask the patients for, and he said I told the patients if they didn't try this new drug they die. Now, obviously, that would not pass an IRB these days right. But it sums up I think in a nice, you know, way what exactly, you know, I mean he wasn't lying. You know, but it's not exactly what we would count as. So it gives you a sense of sort of what happens so they didn't think they had to ask these people they didn't think they would understand you know it's just all the things all the reasons who get the regulations and IRB after the exposure all these studies. So how do we talk about syphilis, not syphilis, Tuskegee. How do you have a conversation about Tuskegee that is impactful and you know how do you take that thing and well I'm going to read something because I think I'm not speaking it but one of Dr. Reddy wrote Dr. Reverby what are your thoughts on the ad campaign that focused on the stories from descendants of the men in the Tuskegee study as a way to encourage people to get the COVID-19 vaccine. I thought that was terrific. I really did. I mean, because I thought it made clear that people who had the right to be the most mistrustful of the government were telling other African Americans don't be afraid. So I thought that was actually brilliant and really, really smart use of that but it raises this interesting question for those of you in clinical practice like, how do you ask about, you know, the mistrust in a 15 minute encounter, you know, with a patient that you don't know and that's a really tough one to answer and I'm not sure it can be done individually I think it has to do with the way we do community outreach the way we talk to patients who the patients see when they first come in. I mean, obviously one of the points I made was you can have racially concordant physicians and nurses and still do things incorrectly. There's no guarantee here, although there presumably is at least slight chance that it might be better. But I think we need that kind of thing we need more conversations in the community outside of the clinical moment because at the clinical moment I think it's too hard to have that kind of kind of conversation. And you can't assume what patients know, or don't know unless they raise it. So I think that's part of the problem and there's just all the assumptions that get me about African American patients that drives me to distraction I'm still going to write this essay one because my husband is African American and the joke in the family because they're from Virginia is that they're also related to Jefferson right. So I'm going to write this essay called my husband's Thomas Jefferson problem. Because every time he has medical care, they say well because you're African American I'm thinking nice related to Jefferson it all comes from the Jefferson genes you know not some long distance African. Which gene pool, you know, cause whatever genetic basis might be for this illness so that's part of the problem is we make you know we have a one drop rule in medicine around around race that's a real problem and trying to understand what happens. But to pick up on what you said before policies and the things we do have huge implications I mean we just think about the impact of housing. During the FDR administration laying the foundation for, you know, huge social issues in Chicago so we have to be more thoughtful and more purposeful and think long term about the impact to now on the future. But I also want to take a piece about the fact that because I think a really important point that I just want you to spend a minute on is, how do we make sure we do not become cutler. How do we become, you know, better in thinking about the lessons of people who went astray. You know, because I, it's easy to get distracted and you have a study and you're hoping for a trial because it could be a career ender, you know, of course, of course, I think it really requires people on various committees that look at the stuff who are outside. And I think it's really important to get it who can help you think it through and I mean when I try to explain to people like my favorite quote actually when I started the research is from. So a physician named Joseph Earl Moore who was like the leading syphilologist at Hopkins in this time period and he gives this talk in 1954 and he says, and this is by then penicillin's, you know, getting widely accepted and the money for VD research is going down and he says syphilis is going to go away with all its secrets withheld from us. And I thought that was so telling and understandable so I said it to physicians when I speak so suppose you were an HIV researcher and tomorrow, we had a one pill that if you got it, you know, unprotected says take this pill it will never get it. Right, so then all the HIV money that people have gotten for the last 40 years right it's going to dry up, and you're going to have to figure out a new research area and you're going to be both happy that obviously the disease will go away and then you're going to be really sad that your career is going to have to make a big shift right. So that's what's going on in the 40s and that's put a reason why they think they hold on to to sticky because they they even say that we'll never have a pool of un, you know, untreated people before I mean they actually in the end didn't have a whole pool of untreated people because a lot of people escaped to antibiotics by a hooker by crook. Because if you sneezed in 1950 you got a penicillin shot, but you know they didn't. So that's the word but I think we have to think about the nature of the way we do research the pressures to get the article out all of that and the corners we end up cutting because of that I mean it's understandable. It's almost like two systems, you know, butting heads against each other. I just want to comment on something in the chat. First of all, I want to thank you Susan for giving us for giving a talk that was incredibly rich but also time for people to finish up the questions before people have to go to clinic. One of the colleagues Carla Kern said, you know, about dealing with this issue about hesitancy. She says, you listen and when people ask questions or show hesitancy, you ask about their concerns and experiences, but then you are running pretty behind soon. So when patients ask me if their cancer had been diagnosed soon, if it would be curable. I never know the answer but I always start with, I wonder that to and see where that lead would go and take them so it's a way that the. Yeah, exactly. The other thing is, I swear to God I'm going to write an essay because I'm just dealing with apnea issues and I've had six mass none of which fit, and it keeps saying on my medical record non compliant, and I keep going no I'm compliant I tried for six months, it's the machinery that's non compliant. And another in the chat. Where do you see inclinations for melodrama overruling the opportunity for more useful takeaways currently in the coverage of coven. Yeah. You know it leads it leads kind of problem that we're facing right so all the dramatic stuff is happening and and I think it's a real problem and I mean I, we were chatting earlier I have family I have a family wedding I'm supposed to be going to and I'm not going because one of my nieces is refusing to be vaccinated and I'm just refusing to show up at this wedding under the circumstances so there's just, and people have just dug themselves in so hard that it's really difficult to figure out how to talk to them but I think we just have to keep trying to be really sensible, speaking clearly I mean I've really been impressed with some of the medical physicians, the physicians who have spoken on coven deeply she shot from Brown University who seems to be the star at least was early on I thought was really, you know, gave very clear answers really quickly. Not a lot of folder all not a lot of medical blah, blah, blah, blah, you know, and was really clear so I think that makes a big difference but I think you know we're struggling against, you know just the, the scientific ignorance and the leftover. I mean, in some ways I'm help respond I mean I'm a 60s kid so you know we're responsible for that don't trust anybody over 30. You know, question every institution you know the government lies, I mean you know I was part of making that possible right so now we're reaping a particular kind of mistrust, you know, that we engendered, you know. Well listen my friend. Any last questions before I give Dr. Reverend be a little downtime before she meets with the ethics fellows this afternoon, but I want to also say again on behalf of the McLean Center in the University of Chicago, you really know that that lecture embodied what we most hope would be part of this lecture series is to see history with new eyes and to look at the data in a thoughtful way and hopefully my my big hope is maybe down the road as a result of exactly the kind of things that you've been studying and talk about that we have a more nuanced understanding and maybe we can plan for a better future. I hope so. All of us we really enjoyed it. Thank you. Thanks for the time I appreciate it. Thank you for inviting me I'm sorry again. I'm not going out for beer with you after would but another time. Thanks, bye. Just a quick, a quick word. Yeah, using and the fellows will gather at 130. Okay, in a half an hour. Okay terrific I have that other link. Thank you. There'll be a zoom available on. I've got it to. Okay, thank you. Thank you again for the chance. Nice meeting you all.