Gonorrhea Toothpicks
Episode Description: From 1946 to 1948, the U.S. Public Health Service conducted STD experiments in Guatemala on several vulnerable populations — including prisoners, soldiers, and psychiatric patients — without their consent. The truth of this study was not uncovered until 2010. How did this happen? Today, I am joined by Dr. Kayte Spector-Bagdady, who was the associate director of the Presidential Commission for the Study of Bioethical Issues under President Obama.
“What they were the most worried about was that they were going to get in trouble as opposed to that they were going to hurt people.”
Yibing Zhang: Hi everybody. This is your host, Yibing, and you are listening to Limboland. From 1946 to 1948, the U.S. Public Health Service conducted STD experiments in Guatemala on several vulnerable populations -- including prisoners, soldiers, and psychiatric patients -- without their consent. The truth of this study was not uncovered until 2010. How did this happen? Years ago, I remember learning about the Tuskegee-Syphilis study (which was the textbook case of what not to do in research) way back in high school, then again in college and medical school. Although the Guatemala STD study was conducted over a decade after the start of the Tuskegee-Syphilis study in the 1930s, they were quite related. How did the experiment in Guatemala come about? Why were they so interested in studying STDs during that time? Today, I am joined by Dr. Kayte Spector-Bagdady. She was the associate director of the Presidential Commission for the Study of Bioethical Issues under President Obama.
Dr. Kayte Spector-Bagdady: The Guatemala and the Tuskegee experiments were very related, and not only were they related but they had a lot of the same researchers. So it was a small community of men in the public health service that did research on syphilis. And there was enough syphilis at the time that you could specialize in syphilology. So Dr. Cutler, who is the main researcher on the ground in Guatemala, was also an investigator in the Tuskegee-Syphilis experiments. And that’s actually how we ended up rediscovering the Guatemala experiments because Susan Reverby, who’s at Wellesley University, was writing a book on the Tuskegee-Syphilis experiments and went to go read the personal files of one of the smaller investigators on Tuskegee, who was Dr. John Cutler. What she found was 26 pages of documents that were all devoted to the same study that wasn’t Tuskegee, it was Guatemala. At the time, in the 1920s and 30s. . .we’ve got world wars and in particular during World War II, one of the major problems during WW2 was men being put out of service, not because they had been shot or injured but because they had gonorrhea. Because we didn’t yet know and we didn’t know until 1943 that penicillin cures syphilis, and that penicillin can be used for many of these things. So when the public health service, Dr. John Mahoney, discovered in 1943 that penicillin cures syphilis, they wanted to immediately transition to how to prevent the acquisition to STDs in the first place. So at the time during WWII, the US Army Service men would get something called a pro-kit and it was a prophylactic kit. So they were post-exposure prophylactics and it was a zinc exposure prophylactics. It was a zinc based ointment that the men were supposed to rub on themselves after intercourses. And so you can imagine that it wasn’t particularly appealing for the servicemen to get up immediately after intercourse and cover themselves in zinc oxide. So they didn't do it very often. They were looking for a more effective post-exposure prophylactic. According to John Cutler, there was a gentleman by the name of Dr. Juan Funes, who came up from the City of Guatemala for a fellowship at the Public Health Service in New York, the Venereal Disease Research Laboratory. And they were talking about how to design an experiment to test post-exposure prophylactics and one thing that’s really challenging about designing sexual intercourse, post-exposure prophylactic studies is it’s hard to control people’s sex lives. Allegedly, Dr. Cutler said that Dr. Funes suggested that they hold experiments in City of Guatemala because sex work was legal in the prison system there with the idea being that they could conduct controlled “natural” experiments where they would have the male prisoners have intercourse with female sex workers, who had STDs. And they can figure out whether they could prevent it. So that was the goal of the experiment was to improve prophylactic methods for the U.S. armed services.
Yibing Zhang: Was the connection with Dr. Funes the main reason why the researchers chose Guatemala for these experiments?
Dr. Kayte Spector-Bagdady: That's what Cutler wrote in his final report was that the reason they went down there was because of this connection with Funes. Of course, it's more complicated than that because we know from the history of experimentation in this country and some very similar experiments that the same group of men conducted at a federal prison in Terre Haute, Indiana, that there are much higher standards for informed consent and for minimizing risk and burdens to participants in the U.S. You know, Cutler claimed that the only reason they went down there to Guatemala was because Dr. Funes suggested it. But certainly, there were myriad reasons having to do with the vulnerability of populations and sort of xenophobia. There was a lot going on, more than just, it was an easy place to go.
Yibing Zhang: You mention Terre Haute, Indiana. Before going to Guatemala, the researchers studied gonorrhea in prisoners at the federal penitentiary in Terre Haute. But, that study failed. Why did that study fail?
Dr. Kayte Spector-Bagdady: Well, so, they were different experimental designs. In Terre Haute, Indiana, they weren't using sex workers. It was a gonorrhea experiment, and they were manually putting pus on to essentially toothpicks and inserting it into the men’s penises. And one of the things that they found was that it’s actually harder to transmit STDs than they thought in sort of a controlled experimental design. As you can imagine, if you’re trying to test the effectiveness of a post-exposure prophylactic and no one is getting an STD to begin with, you can’t measure how much better the prophylactic is than nothing. Also, that’s not how people get gonorrhea . . . is by sticking a toothpick in their penis. You can question, sort of, the utility of the information to know that a post-exposure prophylactic is effective. So it’s effective against toothpicks, which is not necessarily helpful scientific information. So there were a lot of problems in the Terre Haute study that then continued in the Guatemala study. However, one of the things that the Terre Haute study did was that they spent a lot of time and consternation, there were lots of letters written about making sure they got fully informed consent from the men in Terre Haute, who were largely white, American men. And that was not only not considered in Guatemala, they were actually letters back and forth talking about why would they bother to get informed consent, it would only confuse the people in the prison. . . or Cutler’s supervisors, Dr. Arnold, wrote to him and said, “You know, I have serious concerns because the people who were in the psychiatric institution can’t give informed consent like some of the other populations that you’re considering might be. But maybe I’m worrying too much.” And really, what they were the most worried about was that they were going to get in trouble as opposed to that they were going to hurt people.
Yibing Zhang: They started out trying to do the whole, you know, sexual intercourse, how STDs are normally spread but turns out, that also did not work as well as they hoped it would.
Dr. Kayte Spector-Bagdady: Yeah, exactly. Dr. Juan Funes, the one who had gotten the fellowship, was also the director of the Public Health Service down in Guatemala City. And sex work was legal and highly regulated. Sex workers had to report to the public health department twice a week for STD testing. Under normal circumstances, they would get tested and if they’re found not to have STDs, they would get their license back and they could continue their job. But for the experimental design, what then happened is if women came in and they were found to carry an STD (so gonorrhea or syphilis), Juan Funes would refer them to Dr. Cutler in the prison which was just down the road. And he would use them in his experiments. However, when they found that they weren’t transmitting STDs effectively, Dr. Cutler started doing what he called, “superinfection,” of the women and would actually fill them with pus or inject emulsified syphilitic fluids into their cervix before intercourse with the men. And then that still didn’t work. They still didn’t have enough power to do effective STD experiments. So that’s when he started to move on to just manually infecting the men himself.
Yibing Zhang: Did the women who he infected with this, did they know what they were being injected with or exactly what was going on when it was happening?
Dr. Kayte Spector-Bagdady: So there’s unfortunately not a lot of data we have relevant to the women’s experiences. We don’t really know what they thought or knew. Certainly, getting some sort of pelvic exam or manipulation before performing their work would have been abnormal. I’m not entirely sure what the team told them what was happening. Although, considering they were lying to all the other subjects, I assume they’re also lying to them. The other thing that we know is that while about half of the participants in the STD experiments received some form of treatment for the STD that they were exposed to. We don’t have records for any of the sex workers receiving any sort of treatments.
Yibing Zhang: That’s really unfortunate. You were talking about how sexual intercourse really did not work well and they moved on to a more direct method of trying to inoculate these men with gonorrhea or syphilis.
Dr. Kayte Spector-Bagdady: The different diseases they exposed men in different ways. So the gonorrhea, they would actually take pus from one man who was in the infirmary with gonorrhea and insert it into another man. They were not only evolving in what STDs they were testing and how invasively they were testing it, they were sort of evolving in the vulnerability of the populations. They involved soldiers and prisoners and then psychiatric patients. And the psychiatric patients were victim to really the most aggressive experiments. And we assume that’s because they had the least volition and autonomy of any of the different kinds of participants. And so in the psychiatric unit, Cutler also sometimes put it in people’s eyes, or in their rectums or had them swallow it. So, some really invasive stuff. Syphilis, he exposed people to by, on men, he would scratch their genitalia or their arms. And he would rub in emulsion that was taken from somebody else’s sore, syphilitic sore. And he would inject it into their arms or genitals. And sometimes he even injected it into the base of their neck. And the reason for that is . . . if syphilis is allowed to progress naturally, it eventually becomes neurosyphilis and attacks the brain. And, they were trying to study neurosyphilis and sort of skip to that point of the natural progression of the disease and give people neurosyphilis directly. And the last STD they tested on was chancroid. And again, to expose . . . And it was just done in the psychiatric institution. And to expose them to chancroid, what he did was, again, stretched their arms and rubbed chancroid into it.
Yibing Zhang: At some point, even Dr. Cutler’s supervisor, Dr. Mahoney, was like, “Hey, maybe we should stop doing these experiments,” and was writing back and forth with Dr. Cutler, saying that maybe we should put a halt on these experiments. But it still continued on for much longer than that.
Dr. Kayte Spector-Bagdady: Dr. Cutler supervisors, Dr. Mahoney, who was the director of the Venereal Disease Research Laboratory of the Public Health Service, and Dr. R.C. Arnold, who was the associate director of the VDRL, expressed a lot of concerns about Dr. Cutler’s methodology throughout the years that he was doing it. Their primary concern was scientific. Which was the. . .what good is it to know that the prophylactic is effective against you putting a toothpick in yourself because that’s not what was happening. So this is not good experimental design. But they also raised some concerns about informed consent, mostly concerns about getting in trouble. They kept raising concerns but they never stopped him. And they went down to visit and they were in control of the money. And they never stopped, they never went down and actually put themselves physically in between Cutler and these subjects. Eventually when the grant ran out after two years, Cutler hadn’t spent all the money. Often, what you can do if you’re an NIH funded researcher is ask for a no-cost extension. Say, hey, I need a little more time to do the work. I don’t need more money but I need more time to finish the work. And Cutler requested that and was denied. And that was really the only moment when he was finally cut off was when his supervisor said, “You have to stop. You have to come back. We won’t give you more time to keep doing this work.”
Yibing Zhang: The people you mentioned, did they ever go to Guatemala and see first-hand exactly what was happening with these experiments?
Dr. Kayte Spector-Bagdady: Yeah, so we know that they all went . . . that many of Cutler’s supervisors and associates went down to visit Guatemala. There’s not detailed records of what exactly they saw and did. But we get the general sense that they knew very well what was going on from the letters back and forth. And in fact, some researchers, like for example, Dr. Eagle at Johns Hopkins actually asked Cutler to add experiments for them. So one of the reasons why we knew that Dr. Cutler knew that what he was doing was unethical was because right around the time he was conducting these experiments, there was actually a science report in the Times about Dr. Eagle’s experiments at Hopkins. He was doing syphilis research on rabbits. He was doing prophylactic treatment research by injecting live research in rabbits. And the scientific write up said, “Of course, this would be ethically impossible to do in humans.” So, not only was that printed in the New York Times during the experiments. But we have a letter from Cutler back to his supervisors, saying that he read that article and that if anybody knew about their work, they would get in a lot of trouble. So they were very much aware that what they were doing was wrong. And actually, ironically, when Harry Eagle found out about Cutler's research in Guatemala, he asked Cutler to do work with his strain of syphilis that he was using at Hopkins. So he also didn't learn his lesson from the New York Times report.
Yibing Zhang: Even if they get the results they wanted and if they publish these results, there would probably be a public outcry. Did they keep going because of scientific discovery?
Dr. Kayte Spector-Bagdady: Yeah, I don’t know that there would have been a public outcry. That’s not clear to me. Because, if you think about it, the Tuskegee syphilis experiments. . . they published for decades in the scientific literature and it wasn’t until 1972 that they ended up getting in trouble. So there's actually a letter from one of Cutler supervisors to Cutler, saying, You Know, in your final report I see no reason to talk about where in the country the work was done. Right, so there was a lot of. Active talk about covering up how they did it, an where they did it. So I don't know that had they ever published it, they actually would have gotten in trouble, but they were either so terrified or disgusted by what had happened. They never did, and that's our theory for why doctor Cutler donated all of his personal documents to the University of Pittsburgh, where they were discovered. We probably still wouldn't know about it to this day if he hadn't done that. But he did that while he was alive. He gave all the records of this study to the University of Pittsburgh and our working theory, at least, is that he didn't regret doing it. He didn't see anything wrong, and the only thing he regretted was not being able to publish it. And there's actually this really incredible Nova special called Deadly Deception and it's on the Tuskegee syphilis experiments and the only investigator who was willing to be interviewed about the Tuskegee syphilis experiments was actually Dr. Cutler. And in that interview he said that the experiments were for the benefit of the black community.
Dr. John Cutler [From 1993 Nova Special called “Deadly Deception”]: The Tuskegee study has been grossly misunderstood and misrepresented this way. And the fact was that it was concern for the black community, trying to set the stage for the best public health approach possible and the best therapy, that led to the study being carried out. It was important that they were supposedly untreated, and it would be undesirable to go ahead and use large amounts of penicillin to treat the disease, because you'd interfere with the study.
Dr. Kayte Spector-Bagdady: And his only regret about the Tuskegee syphilis experiments was that they ended.
Dr. John Cutler [From 1993 Nova Special called “Deadly Deception”]: We were dealing with a very important study that was going to have the long-term results of which were actually to improve the quality of care for the black community so that these individuals were actually contributing to the work towards the improvement of the health of the black community rather than simply serving as merely guinea pigs for the study. And of course I was bitterly opposed to killing off the study for obvious reasons. My regret is, in terms of the study, none.
Dr. Kayte Spector-Bagdady: So we have every reason to believe he felt the same way about the Guatemala experiments and that's why he contributed his documents to the University of Pittsburgh.
Yibing Zhang: Because he wanted them to be seen and known. That he did this study and it was for the greater good of the population.
Dr. Kayte Spector-Bagdady: I think he believed to his death that he did good work.
Yibing Zhang: I’m kind of speechless. Did any subjects involved in these experiments pass away because they were inoculated with gonorrhea, syphilis or chancroid?
Dr. Kayte Spector-Bagdady:
During our investigation we found that about 87 people had passed away during the conduct of the experiments. However, there wasn't enough information to really definitively say why people died. So usually people don't die from syphilis for decades or people don't die at all from gonorrhea necessarily unless it goes on forever and ever. But one of the things to know was that there were fairly high rates of disease in the Armed Services and in the prison and in the psychiatric institution. And actually, we think that probably the majority of people in the psychiatric institution didn't have psychiatric illnesses. They had sort of other kinds of neurodegenerative diseases. So many of these people were very sick anyway, and also Cutler would often pick people who were dying to do some of the most invasive experiments on. I guess with the assumption that. . .well, they were going to be dead anyway, so who cares what we do to them, which is horrible, and often people were exposed to STDs very close to when they died. And there's no reason to think that being exposed the STD killed them. I think it's more likely that the scientists knew that they were dying and so involved them in the experiment.
Yibing Zhang: I remember reading about this one girl who was in the psychiatric hospital, on the brink of death. And they went ahead and put gonorrhea on her eye and in her rectum. Then she passed.
Dr. Kayte Spector-Bagdady: It’s pretty horrible.
Yibing Zhang: If Dr. Cutler never turned in any of his files, we would have never discovered that this even happened. I’m not sure if the people who worked on this study on the Guatemala side also kept those files but kept it hidden. I just wonder what else could have happened, or been swept under the rug . . . where people did something unethical, never published it and just kept it hidden forever.
Dr. Katye Spector-Bagdady: That's a good question. When Susan Reverby discovered the documents about Guatemala and after she wrote about them and presented it at a national historical conference, there was a lot of interest. She then contacted Dr. David Sencer who was the former director of CDC to conduct sort of a preliminary investigation of the documents. Once they had done that and they established that something pretty seriously bad had happened, they contacted the president — then President Barack Obama — who on the first day it was announced, called president of Guatemala and apologized. And Secretary of State Clinton and Secretary of Health Sebelius both also apologized, which was important because, in comparison to the Tuskegee syphilis Studies, it took decades. It took, took Clinton for an apology for the Tuskegee syphilis experiments. But President Obama apologized almost right away. And so, I was on Obama's Bioethics Commission that was assigned the conduct of a thorough fact finding investigation into what happened in Guatemala, and we liaised with the Guatemalan government, who also put together their own investigation committee that was being run. By then, vice president Rafael Espada of Guatemala. . . And in Guatemala, they keep immaculate records of everything that happens. The archives are unbelievable and they did in fact find their own sort of corresponding set of records. Because, not only did these experiments involve Guatemalan people, but they also involved some of the Guatemalan doctors and researchers and prison directors and the director of the orphanage were also sometimes involved in actually intentionally infecting people. So they had their own slew of documents. However, even though the US provided all the documents that we had, the government in Guatemala did not provide any of the documents that they had back to the United States. But, they did end up releasing a report several months after ours, which has very extensive supplementary material. The report is the same basic story that was told in the American report, but there's two big big supplements, hundreds and hundreds of pages that include all the data, none of which sort of contradicts the American data or really changes the basic story. But they did do a very thorough job of releasing lots of information, although I can't independently verify whether it was all of the information. But to your point. We don't know what we don't know and I'm sure given our history of research ethics in this country, there are horrible things that have happened that either no one has discovered or the right person didn't discover it to know its significance.
Yibing Zhang: I see.