Inclusão e acessibilidade na sociedade, no trabalho e na Petrobrás - Parte 2

[Music] Last time on the Normals, we learned that in the 1950s, the National Institutes of Health had lots of money and wanted to recruit healthy volunteers for their research. The institution's goal was to study normal human physiology, test drugs and treatments on healthy people, instead of sick people. Two peace churches, men and nights in the Church of the Brethren, had an excess of healthy human volunteers. These were conscientious objectors, looking for alternative service, instead of being drafted to serve in the war. These were the Normals, and the Normals surprisingly flourished at NIH, supporting each other while they underwent sometimes painful and dangerous procedures. On off-study days, they had picnics and bopped around the DC area. In this episode, we look at how a program that started with religious objectors in the 1950s expanded to include more and more people from all over the country. [Music] One of the big concerns that started to arise in the late 1950s was just this worry that there was something fishy with the data. Lurostark is a science historian and author of the book The Normals, a people's history of modern America in five human experiments. She says the NIH researchers were noticing that this big program that they'd set up in the 50s with all these happy, healthy normals, their numbers were all over the map, especially when it came to psychological research. They were kind of at a loss for how they could actually come up with some sort of scientifically interesting results given the data they were getting back. So there was a ton of variety. I really thought homogeneity was going to be the problem. I know, I know, right? Yeah, no, that was not. And the NIH scientists were pretty convinced that it was a subject who were the problem. Not their study designs, not their approach to studying schizophrenia, not the use of LSD in all these people. The NIH did a survey on the normality of normals that they had on hand in the late 1950s. They wanted to find out are the normals normal enough. It turns out on these different tests that they did that the normals didn't look the same as survey results from college students, for example. The normals actually really valued things like service, like being invested in a community. They were less concerned about things like earning a lot of money and having a really big income and their identity was not oriented entirely around their jobs. But the researchers decided was that this is not the constitution of a normal person. Researchers thought this lack of normalcy in their piece church volunteers was showing up in the studies and they thought it was the people. Not their methods, not the questions they were asking. And so they decided they needed to expand their base of humans. They needed to add to their study population. Bringing in more normals that by NIH standards, maybe were more normal. So once again, NIH researchers have the problem, enough money, but not enough human subjects. What they do is actually start signing contracts with other types of organizations. Many colleges at the time require students to do work service or a co-op term, basically internships. They want to define placements for their people for ballpark of three to six months. Now colleges are going to have slightly different motivations than peace churches. They're looking for internship positions for students, not alternatives to military service. But this still felt like a great fit. They wanted the people to get paid and they wanted them to be well cared for with the justification that science was good for humanity. Way back at the beginning of the normals project, some participants were doing more than being test subjects and going on field trips into DC. Some normals were using their free time to help out with NIH research in the lab. You might remember Dale Horst, an anabaptist conscientious objector who served as a normal in the early days. We talked to him last episode. When he wasn't being experimented on or going through a wash out period, he was actually working in a lab. That was my door into science. The people that I worked with were really kind about teaching me things and encouraging me telling me that I was really good at that. The lady I was working for who was a biochemist. She had this idea of looking at something in people who had LSD and she assigned me to actually do the lab work for that study. And when it was finished and they wrote it up, they made me a co-author. What? I was a co-author before I went to college. That's pretty amazing. It is amazing. Dale thinks that he might have initiated and I could believe it. He was there in 1954, which is to start spending your time when you're not on study in a laboratory because you're bored out of your skull. And to that NIH administrators, we're very clear that they wanted to keep the normals occupied. So the NIH decided to formally make this hands-on research component a part of being a normal. And there was plenty of demand from colleges, universities, and students for a closer affiliation with the prestigious institution. They are being offered lab experience, maybe even letters of recommendation. At the price of a little human experimentation. The other bonus that not too many people talk about as much is that if you got the people to go in the winter time, it was also much cheaper for the universities to be able to turn off the heat. And so convenient. And also, yes, we'll call it education. After Dale's time with the normals project, he ended up with an advanced degree in psychopharmacology and went on to work in the pharmaceutical industry. Many times testing drugs in human subjects. I asked him if he thought the work he was part of back in his days as a normal carried through to today. When I look at it from a standpoint of a psychopharmacologist, and I look back and I say, well, what were they doing? I don't think it was a great contribution because they didn't know. They didn't know what to do. I mean, it was just the beginning of a whole field of psychopharmacology. For this episode, I actually got in touch with a few of the normals from this college student era, including Ken Nas. He was at Chico State University in California when he first decided to become a normal. I was a psychology student and I believe it was a poster in the hallway of the psychology building that I happened to see it. And I was just curious. I had never been east of Nevada. What did you think when you heard that you would be a research subject as well as an intern? I think I was very naive as a 22-year-old. And I thought, well, heck, it's put on by the National Institute of Health. It's got to be safe, right? You couldn't pass it up. You made $12 a day and you got to eat hospital food and live in a hospital. And what sounds better than that? And what did the internship have to offer that was attractive? I didn't know ahead of time what I was going to get to take part in. But even the side-year internship focus, you got to go here like symposiums by doctors on all kinds of topics. So that was intriguing. With Ken and friends drove across the country from California to Maryland, they're excited and about symposia and research work experience dimmed a bit as they thought about the kinds of experiments that would be done on them. And as chance would have it, Ken ended up on the Endocrinology Award, his absolute last choice. They did take blood and they did ingest me with a few things. I can't name what those were, but it wasn't like every day. I mean, I only had it. I think it was either two or maybe three experiments they did. And what did you do during your internship time? Part of my job was actually shooting up Reese's monkeys. We would study them. We would watch them during the night, their reactions to different drugs and purposely keep them away because part of this was studying sleep deprivation. And that was really hard. It was tough, but I guess in science, it's like, okay, I'm already a guinea pig as a human being and hear these poor monkeys, but how do we find out unless we try it on something? Ken was fairly positive about his normal experience, but it didn't come across as life altering in the way the peace church volunteers from the 1950s talked about their time as normals. I asked Laura Stark if she noticed this too. Did you personally experience a big difference between the people you talked to who were there in the 50s versus 60s versus 70s? Yeah, absolutely. The only people who wept from being there in the 1950s were the normal through there because they were having a religious experience. And so they were really had this level of emotional investment and meaning associated with it. The only people who actually didn't remember doing it, like I was the one who told that they had done this and reminded them and they're like, oh, - Oh yeah, I guess that was something that I did. It was just a like a lark or like the umpteenth college job that they had to have. There was this remarkable difference in the meaning that people attributed between the 1950s and the 1970s. - When we talked to Dale and Shirley, it did not sound like a picnic, even though they were going on picnics, it still sounded like a pretty rough experience. - Totally, absolutely. - But for some reason, they were happy. - Exactly. - The other ones were neutral to forgetful? - Yeah. (upbeat music) - Another normal from the 1970s I talked to was Cindy Jansen. She shared her experience of working with these different researchers. Like Ken Nas, Cindy was on the Endocrinology ward where they studied hormones and patients and in normals. - I had a boyfriend who was a graduate student at the time and he had done this program and I visited him, I observed it and then the next semester I signed up. So now I was the end that I was reading about in school and that was intriguing because there's medical background in my family, but primarily I wanted to be able to create an application for graduate school that was distinctive. So I knew that there wasn't a lot of privacy. I would have a roommate and nurses and doctors would come and go at will pretty much. So what kind of experiments were you involved in? - There was one where they were studying, I think it's herchewism, which is when women have a lot of hair on their body and they took a core sample of pubic hair and then we're counting the number of follicles for a normal. - In addition to the pubic hair sample, Cindy also goes on to describe how a researcher needed to draw blood as part of the study. And during the draw, the researcher repeatedly poked her trying to find a vein. - I observed that even when I told him to stop, he continued to persist and when a nurse came in, his whole demeanor changed. So then I realized that the nurses were really advocates for us and so I was relieved when the next protocol came up to know that I could seek their counsel. Another one was a pain study where they took out two of my wisdom teeth on one side and that was to assess how long I could tolerate pain or to what stage in the procedure, I guess, before I asked for pain medication, which I did. And then there was a protocol that I turned down. So this is from my journal September 20th, 1979. It was a Thursday. Today, Dr. Maryam came in to tell me about his protocol, which involves an injection of estrogen tagged with a radioactive isotope. Also, he brought it to my attention that Keith and Ken are doing one of his protocols that is far more intense than this one. And he also said that Julius doing this one. Well, I thought about it all morning and in the afternoon, this protocol was heavy on my mind and I was leaning towards saying yes, but I had a very uneasy feeling and I wanted to be settled in my decision. So that evening I called Auntie Reen. And she helped me a lot. She said, "You're young, healthy, and all your cycles are settled. Why mess around with that?" And she's right. Also, I couldn't live with myself if 20 years from now I had cancer and the thought that maybe I brought it on by doing this protocol would be horrible. So I decided right then and there to say no. His answer to me was pretty much that if I wasn't going to do his protocol, I had no business on an endocrinology ward. Well, he said I wasn't rational because I had all my questions answered and that he was going to get me off this floor and the way he said it, left it open enough to insinuate that he'd get me out of the program if he could. Boy, was I mad, but I was very careful that he didn't know. Remember, I was wanting to get from this experience that I would get a good recommendation for graduate school. So you feel like they kind of had some power over you, though, if you wanted this recommendation and they were asking you to do something that you didn't want to do. Very much. Did you enjoy that part of your time there where you're interacting with patients and taking notes and kind of doing this work part? It was fantastic. It also being interested in public health was an opportunity that I was glad to participate in. And although I've highlighted today this kind of unique feature, it overall was a very positive experience. It really, for me, was validating that I wanted to be in a clinical setting. The letter of recommendations that I received were really helpful, I'm sure, because the university, frankly, would like to have a relationship with NIH. What do you think about this like mixture? Do you think that that's a good way to recruit patients? Well, that's a good question. I think many relationships are transactional. I don't think we can really get away from that. And because they are the leaders in establishing the standards for research, there was a certain amount of trust that I had. But in practice, I realized that they're really needed to be more protections so that the motivations of each member were supported safely. Cindy definitely saw the pros and cons of her involvement. She was really rational about it, but it turns out protections for research subjects would continue to shift over the next few decades. And as volunteers from across the continent converged on NIH from colleges from universities, you'd think that their results would start to become more normal. But no, here's Laura again. There was another form of abnormality that started to emerge in the 1960s, particularly with this group. This group, meaning young students from small liberal arts colleges and universities, basically a lot of them were hippies. And there was a lot of concern from the NIH administrators about haircuts, shaving, women wearing shorts. An appearance which was equivalent to being politically liberal or what we would think of as progressive today. The peace church volunteers, the ones from the 1950s, their normalcy was questioned because of their lack of concern with economic rewards and jobs. 1960s normals were suspect because of political ideology. There's no specific correlation between someone's hair or shorts and whether or not they provided good data. The connection that they were drawing was around trust worthiness. So they weren't sure if they were getting the results that they were getting because the normals weren't following protocol. If somebody is on a metabolism study and they're actually not finishing their metabolic, yeah, exactly. At this point, the normal control program was really big. And how the normals were treated really depended on what organization had signed them up. In the 1960s, young college students come into the DC area to be normals from, for example, Antioch College also wanted to attend protests in the US Capitol, but NIH wasn't okay with it. The normals started to argue that this was a violation of their freedom of speech and their right to political practice. And the university lined up behind them and told NIH that they needed to let their normals go to these protests if that's what they wanted to do. And NIH said no and Antioch ended their contract. Wow. Some colleges stood guard over their students. Other institutions were more lax and didn't provide normals with a backup if they had a conflict or a problem with NIH. This trend continues as the hunt for more and more normals expanded. Normals that they considered to be on the street in narrow, for them, this translated into college and university students who wanted to be scientists, basically, kind of defining normals in terms of people who aspired to be NIH researchers. And so there were more contracts with more and more universities, specifically targeting stronger science programs or rather targeting universities that had students who wanted to be scientists, but didn't have many resources. Like if you're at a university and they don't have what you need to go to NIH to become a guinea pig but also get to play with the toys. Exactly. Exactly. So they weren't doing things like signing contracts with Harvard or something like that. They were signing contracts with many, many California state university system with Ohio State. Were they happier with the results they were getting from the normals? The normals were being used on so many studies that it would almost be impossible to have an accounting of it. I mean, there were thousands of people. So it was just enormous. And the researchers were also turning over because they had fellow's programs. They had short and long term researchers. In fact, NIH was flooded with researchers coming to serve their draft terms as fellows at the medical center. And I mean, the normals were just practice material for the researchers. And so one of the huge values of the normals for NIH is they just got populations for these trainees to just practice on. Now we're starting to see students just coming to NIH for a day or so at a time, hours at a time, to service subjects purely for money. Motivations were actually changing on both sides. Volunteers' reasons were shifting from altruism and service to learning and resume building to cash incentives. This for-pay commuter style approach to normals was a program that really started ramping up in the 1970s when the U.S. and other countries, notably the U.K., were cutting way back on federal budgets and spending. It was a real time of economic crisis and that impacted NIH and the normals program as well. So they changed the way they were contracting with people as a response to some of these like larger forces in the government and the economy? Exactly. There were a handful of problems that I know of just in the small sample of interviews that I've done of the thousands of thousands of people who were normals through this period, but the first death was in 1980 with a young woman named Bernadette to Gilchrist. Bernadette was a 23-year-old nursing student from a local university. She was a normal in the National Institutes of Mental Health, but she wasn't living there. She was more like a commuter normal. So she was in a study as part of NIH's sleep lab at that time. She was a very devouch Catholic and so very interested in helping people in training to be a nurse. But one of the things she also really needed, like a lot of college kids, was money. The fact that it was a sleep lab, it made good sense to Bernadette. She thought about it to get paid for sleeping. When Bernadette passed away in the sleep lab, whoever was attending at that time assumed that there was a problem with the monitoring, not that there was a problem with Bernadette. But one realized that she had died until the experiment was over. So she was part of a big, really remarkable Catholic family. She was the second of nine kids and I've done oral histories with all eight of her siblings. Yeah. And what do they tell you about what happened to Bernadette? Yeah. I mean, well, they're all very clear that Bernadette, at that point in her life and going into that point in her life, had really struggled with having an eating disorder. And I think the things that I find most striking about Bernadette's story is her fortitude and how intrepid she was and just resilient and continuing to come back from this illness of having an eating disorder and really finding a way to get through college to go on into a nursing degree in a way that she was happy and well and safe. Bernadette had actually been a patient at the NIH clinical center early in her life after she had had a heart attack related to her eating disorder. It wasn't something that she reported when she checked in as a normal, but it was on record. They had treated her and they had her name. There was a mix up with the records. So they're basically had just been something like a scapegoating of Bernadette and exposure of her mental illness and the fact that she'd had a heart attack many years earlier without any accountability around sort of medical record keeping on NIH's side. Did anything change in the normal's project or NIH after that? Well, one of the things that I find difficult to understand is that things did change, but only changed in a direction that is what caused Bernadette's death in the first place. And that was moving away from signing contracts with organizations that had personal relationships with the people they were sending and had a real investment in the individuals, whether they were students or members of civic groups like you knew who the other people were and you had some responsibility to them. In keeping with this trend, by the end of the 1970s, the peace churches had essentially stopped sending normals. The people who would have served as normals wanted to have something that was a much more immediate impact that they could see. Like doing construction work someplace that had been devastated by a natural disaster were just not interested in the kind of nebulous promise that serving in these studies would serve humanity ultimately at some point in time. NIH basically was signing contracts with organizations that were just there to process paychecks. They didn't know the people or act as an advocate or unifying force. They were just a pass through to get normals into the clinic. Bernadette as a commuter normal was on an hourly contract and that became the normal for normals. So we met a gig economy for normal control volunteers. They started a formal arrangement to bring in federal prisoners as well. Just between 1960 and 1964, there were 1,000 men who were incarcerated who came to the system. The research that they wanted to do, they knew was too dangerous to do with people who were full civilians. They flew and bust federal prisoners from at least 12 different sites in the United States in order to specifically be in virus experiments. These were often intentional infection experiments in which they would see the progress of a disease in someone. In one instance, they were testing a flu vaccine, but the culture for the vaccine was contaminated with a virus that they thought at the time caused brain cancer. So they actually then started studying the federal prisoners that they had brought in and given this in those terms as well. This is really a shift from where we started with the normals, which was finding voluntary, healthy human subjects, voluntary being a key word here. Before normals, a lot of human subject research had largely been done on people without full rights. With the prisoners program, we're right back to experimenting on compromised populations of people. NIH's decision to use prisoners and their experiments ended up having a global impact on human subject protections. We'll talk about that in our next and final episode of the normals. We're also going to talk about what this program looks like today. The series was produced and hosted by me Sarah Cresby. Our supervising producer is Kevin McLean. Audrey Quinn is our story editor, Laura Stark consulted. The normal series was inspired by Laura's book, The Normals, a People's History of Modern America in 5 Human Experiments. Music for this episode was by Will Derry Berry and Wen Koi Wen. Thanks for listening.