Speaker 1: Hi, I'm Aaron Welsh and this is This Podcast Will
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Speaker 1: Tuskegee Syphilis Study, the Willowbrook Hepatitis study, medical experimentation at
Speaker 1: Holmesburg Prison. If you've ever taken a bioethics class, or
Speaker 1: if you're a regular listener of the podcast, these cases
Speaker 1: are no doubt familiar to you as just a handful
Speaker 1: of the most infamous examples of unethical medical experimentation. We
Speaker 1: learn about these studies, the victims, the perpetrators, the circumstances
Speaker 1: that allowed them to happen. So as to prevent history
Speaker 1: from repeating itself like this is why we have patient
Speaker 1: protections such as informed consent. This is why we have
Speaker 1: these rules and mechanisms such as institutional review boards. But
Speaker 1: often missing in the telling of these stories is the
Speaker 1: person or persons who fought to expose these wrongs and
Speaker 1: bring them into the light, the whistleblower. What does it
Speaker 1: take for someone to speak out, especially when speaking out
Speaker 1: can lead to tremendous professional and personal costs In the
Speaker 1: occasional human sacrifice, medical experimentation and the price of saying No,
Speaker 1: Author and bioethicist at the University of Minnesota, doctor Carl Elliott,
Speaker 1: explores the moral dimensions of whistleblowing and how the resulting
Speaker 1: fallout leads to a long term, almost existential crisis. For
Speaker 1: doctor Elliott, this is a deeply personal topic, as he
Speaker 1: tried for years to uncover harms carried out in a
Speaker 1: study at his own university that led to a patient
Speaker 1: losing their life. His experience serves as backdrop and crucial
Speaker 1: context for the other stories of whistleblowers that he shares
Speaker 1: throughout this book, at the heart of which is a
Speaker 1: question why do whistleblowers do what they do? It's tempting
Speaker 1: to imagine that if each of us were placed in
Speaker 1: a situation with on ethical medical experimentation, we would stand
Speaker 1: up for what's right, but research shows that's rarely the case.
Speaker 1: Whistleblowing is a complex action guided by moral concepts such
Speaker 1: as shame and honor, and learning the stories of whistleblowers
Speaker 1: alongside the abuses they sought to expose, adds tremendous value
Speaker 1: and insight into human nature itself. Through doctor Elliott's compassionate
Speaker 1: storytelling and contemplative analysis of whistleblowing as a moral dilemma,
Speaker 1: The Occasional Human Sacrifice is truly a must read and
Speaker 1: it will stay with me for quite some time. I
Speaker 1: do want to mention that this discussion includes descriptions of
Speaker 1: self harm, so please listen with discretion. We'll take a
Speaker 1: short break here and then get started. Doctor Elliot, thank
Speaker 1: you so much for taking the time to chat with
Speaker 1: me today.
Speaker 2: Well, thanks for having me. I appreciate it.
Speaker 1: In your book The Occasional Human Sacrifice, you seek to
Speaker 1: answer how unethical experiments are carried out and why blowing
Speaker 1: the whistle is so difficult to do. And as you describe,
Speaker 1: this is a personal issue for you, with you having
Speaker 1: firsthand experience as a whistleblower. Would you mind sharing the
Speaker 1: impetus for writing this book and how it led you
Speaker 1: into a broader contemplation of whistle blowing in medical research.
Speaker 2: Failure, basically how it led me into the book. So
Speaker 2: I guess for me, the story begins back in two
Speaker 2: thousand and eight, when I first learned about the suicide
Speaker 2: of a young man named Dan Markinson in a research
Speaker 2: study in our Department of Psychiatry here at the University
Speaker 2: of Minnesota. The circumstances of that were so gruesome and
Speaker 2: so horrific, and so sort of blatantly exploitative and unethical
Speaker 2: that I felt as if it needed an external investigation,
Speaker 2: partly because of the circumstances of his death, but also
Speaker 2: to ensure that the same thing had not happened to
Speaker 2: others in our department of psychiatry. And so I spent
Speaker 2: the better part of the next seven years basically trying
Speaker 2: to get that external investigation. So, Dan Markinson was a
Speaker 2: young man in his twenties who had become psychotic and
Speaker 2: delusional and dangerous as a result of a psychotic episode
Speaker 2: in the summer of two thousand and three, and his mother,
Speaker 2: after seeing him deteriorate over a period of months and
Speaker 2: seeing the kind of alarming things he had, called the
Speaker 2: police and he was eventually brought to Fairview Hospital, which
Speaker 2: is the teaching hospital here at the University of Minnesota,
Speaker 2: and he was seen by the head of our schizophrenia
Speaker 2: program here, who thought he was psychotic, delusional, dangerous, admitted
Speaker 2: him to a locked ward, had him placed under a
Speaker 2: civil commitment order, and fairly soon began to recruit him
Speaker 2: into an industry funded study of any psychotic drugs that
Speaker 2: he was doing. His mother objected. She didn't want him
Speaker 2: in a study. She felt he could not consent to
Speaker 2: the study, that he was psychotic and incompetent, and that
Speaker 2: the circumstances the civil commitment order, which essentially legally bound
Speaker 2: him to do whatever his psychiatrist was telling him to do,
Speaker 2: prohibited him from being enrolled ethically. And she objected, but
Speaker 2: she was told, you know, sorry, he's an adult. He
Speaker 2: signed the consent form. He's in the study. She then
Speaker 2: spent the next four months trying desperately to get him
Speaker 2: out of the study. He had been discharged to a
Speaker 2: halfway house. She could see him getting worse, becoming increasingly agitated,
Speaker 2: and she was afraid violent. She called, she sent emails,
Speaker 2: She went to the Department of Psychiatry, She wrote to
Speaker 2: the chair of psychiatry again and again expressing her work
Speaker 2: where he's eventually left a voicemail message for the study
Speaker 2: coordinator saying does he have to kill himself or somebody
Speaker 2: else before anybody is going to do anything? And three
Speaker 2: weeks or so after she left that message, his body
Speaker 2: was found in the shower of a halfway house where
Speaker 2: he was staying, and next to his body was a
Speaker 2: note that said, I went through this experience smiling.
Speaker 1: When did you learn about this and what happened after? Like,
Speaker 1: when did this become public knowledge? When did this become
Speaker 1: something that was a news story?
Speaker 2: Not for another four years? I read about it in
Speaker 2: the Saint Paul Pioneer Press, and I believe would have
Speaker 2: been May of two thousand and eight. I was actually
Speaker 2: on sabbatical at the time. I was in South Africa.
Speaker 2: A friend of mine who was one of the reporters
Speaker 2: who did that, Paul Toasto, had sent me links to
Speaker 2: I found it so alarming that when I got home
Speaker 2: a few months after that, I started asking around and
Speaker 2: trying to find out what had happened, because it's actually
Speaker 2: my area of work. I mean, I work on research ethics.
Speaker 2: I work on psychiatric ethics. I had been on the
Speaker 2: institutional review board at the university for several years. I
Speaker 2: knew people in the Department of psychiatry, and yet this
Speaker 2: grizzly death I had heard nothing about it. And when
Speaker 2: I started to ask around it, it just felt as
Speaker 2: if no one was as alarmed by it as I was.
Speaker 2: Not people in the Department of Psychiatry, not people in
Speaker 2: the bioethic Center, not administrators. And eventually it became clear
Speaker 2: to me that it was going to take some kind
Speaker 2: of pressure from the outside to get the university to act,
Speaker 2: and so I got in touch with Mary Wis Dan
Speaker 2: Markinson's mom. She was not happy to hear from me, obviously,
Speaker 2: she had a lot of suspicions of the university. She
Speaker 2: agreed to talk to me, and then after we talk
Speaker 2: she agreed to let me have access to everything I wanted,
Speaker 2: court records, medical records, Dan's diaries, anything that would be useful.
Speaker 2: And so I wound up writing about it and a
Speaker 2: sort of larger backdrop to it, which was a sort
Speaker 2: of scandal about research integrity involving the sponsor of the study,
Speaker 2: Astra Zeneca, and eventually wrote about it in Mother Jones Magazine,
Speaker 2: sort of hoping that having exposure in a national publication
Speaker 2: would shame the university into acting. But that again was
Speaker 2: a complete failure. I mean, it really accomplished nothing at
Speaker 2: all except to make the entire academic hialth Center very
Speaker 2: angry with me.
Speaker 1: As you write, whistleblowing is incredibly isolating and disillusioning, and
Speaker 1: that kind of flies in the face of a lot
Speaker 1: of popular media representations or stereotypes about whistleblowers or stories
Speaker 1: that feature whistleblowers. They might be brave and bold or
Speaker 1: bitter and disgruntled, but they tend to follow this certain
Speaker 1: narrative arc which you describe or you label as Vonna
Speaker 1: gets Man in a Whole narrative. Can you tell me
Speaker 1: more about this narrative, what it fails to capture, and
Speaker 1: what it's really like down in that hole.
Speaker 2: Kurt Vonnegut described the Man in a Whole story as
Speaker 2: somebody gets into trouble and gets out again, And he said,
Speaker 2: you know, we love this story. The Wizard of Oz
Speaker 2: Dorothy kills the Wicked Witch and returns to Kansas, the
Speaker 2: Prodigal Son, Robinson, Crusoe, David and Goliath. The reason we
Speaker 2: like these stories is is that they sort of reassure
Speaker 2: us that the world has a kind of moral sense
Speaker 2: to it, that the universe is a fair and just place.
Speaker 2: And if you watch, you know, whistleblower movies or TV
Speaker 2: shows about whistleblowers, they usually follow some version of that
Speaker 2: man in old story, the whistleblower takes down the corrupt organization.
Speaker 2: What I found when I started looking deeper into these stories,
Speaker 2: actual whistleblower stories, is that they usually don't follow that
Speaker 2: sort of narrative arc. I mean, they usually don't have
Speaker 2: happy endings, and the whistleblowers themselves usually come out of
Speaker 2: the experience with these sort of very deep moral wounds.
Speaker 2: It's almost as if it's a kind of existential disorientation
Speaker 2: because everything that they thought about how the world works
Speaker 2: is upended. I mean, they just assume everybody just assumes
Speaker 2: if they've gotten to the point where they feel like
Speaker 2: there's nothing else to do, they assume that the rest
Speaker 2: of the world is going to be as morally outraged
Speaker 2: by what they have found. And what they're trying to
Speaker 2: reveal is they were when they found it out, and
Speaker 2: then when they blow the whistle, it turns out that
Speaker 2: that's not the case, they think the authorities are going
Speaker 2: to do something, that they're going to leap into action
Speaker 2: and rectify the injustice, and then that doesn't happen, and
Speaker 2: they think their friends are going to stand by them,
Speaker 2: and then that doesn't happen. Even if they have some
Speaker 2: measure of success, they very often come out of it
Speaker 2: with a kind of almost obsession with what they've been through,
Speaker 2: an inability to get over it and put it behind them,
Speaker 2: because it's so disruptive to the way that they had
Speaker 2: always seen the world.
Speaker 1: Right, they're never truly free of that hole, or of
Speaker 1: the feeling of what it was like down in that hole.
Speaker 2: Yeah, I mean, being the whole is a very is
Speaker 2: a very dark place, and it tends to turn people inward,
Speaker 2: and in the hole you can't really think about anything
Speaker 2: other than yourself and what this is doing to you
Speaker 2: and how you get out of the hole. I mean,
Speaker 2: I can remember talking to the whistleblowers in Sweden and
Speaker 2: the power of Machirini scandal and hearing, you know, from them,
Speaker 2: just how obsessed they became, you know, because they could
Speaker 2: they could see it. They were surgeons, they could see
Speaker 2: what was happening. They could see that things were going
Speaker 2: very bad, and that people were dying and no one
Speaker 2: would believe them, and so there's a kind of desperation
Speaker 2: to it, you know, this feeling that nothing else is
Speaker 2: as important as making people aware of this, and yet
Speaker 2: no one is paying attention.
Speaker 1: Let's take a quick break, and when we get back,
Speaker 1: there's still so much to discuss. Welcome back everyone. I've
Speaker 1: been chatting with doctor Carl Elliott about his book The
Speaker 1: Occasional Human Sacrifice, Medical Experimentation and the Price of saying No.
Speaker 1: Let's get back into things. At the heart of your
Speaker 1: book is the question of why not why do these
Speaker 1: unethical medical experiments happen, but why does someone decide to
Speaker 1: blow the whistle in the first place.
Speaker 2: What did you.
Speaker 1: Discover in your quest to answer this question? And what
Speaker 1: roles do honor and shame play in this decision that
Speaker 1: people make.
Speaker 2: Part of it is that very often it doesn't really
Speaker 2: feel like a decision. It feels like there's no choice.
Speaker 2: I mean, people will say, really, I had no choice,
Speaker 2: I had to do it. Fred Alford, who wrote a
Speaker 2: terrific book on whistle blowers, said the question presents itself
Speaker 2: to whistleblowers not so much as what should I do?
Speaker 2: But how did it happen that I found myself in
Speaker 2: a position where there is nothing else for me to
Speaker 2: do but act? I had initially just sort of expected
Speaker 2: that when I began to ask people to explain how
Speaker 2: it got to the point where they felt they had
Speaker 2: to act or to sort of justify themselves to me,
Speaker 2: that they would make a kind of moral argument, you know,
Speaker 2: that they would explain the situation. And it turned out
Speaker 2: that they didn't really do that. Nobody talked about even
Speaker 2: the doctors. They didn't talk about the Hippocratic oath, and
Speaker 2: they didn't talk about the Bible or some sort of
Speaker 2: legal principle. They would say things like if I kept quiet,
Speaker 2: how could I hold my head up? Or if I
Speaker 2: kept quiet, how could I look at myself in the mirror?
Speaker 2: So they sort of turn this moral question about the
Speaker 2: well being of other people into a moral question about themselves.
Speaker 2: They always talked about how it would reflect on them
Speaker 2: if they said nothing. It seems really interesting me and
Speaker 2: almost unexpected or counterintuitive. But the more I heard this
Speaker 2: story and tried to think about it, the more it
Speaker 2: seemed to me that they were speaking a kind of
Speaker 2: language of honor and shame because the honor ethic, and
Speaker 2: what distinguishes the honor ethic from many other sort of
Speaker 2: ways of justifying actions morally is this idea of obligations
Speaker 2: to yourself. That honor is essentially about respect. It's about
Speaker 2: getting the respect of others, but it's also about self
Speaker 2: respect and being able to respect yourself as a result
Speaker 2: of what you do, and the necessity of avoiding shaming
Speaker 2: yourself in the eyes of other people and also in
Speaker 2: your own eyes. And so when people say things like,
Speaker 2: you know, how could I hold my head up, it's
Speaker 2: a very vivid sort of image of respect. How can
Speaker 2: I respect myself? That sort of explanatory frame runs through
Speaker 2: the book, and I have to say it fits some
Speaker 2: of the whistleblowers that I talked to much more than
Speaker 2: it does others. But almost everybody that I spoke to
Speaker 2: spoke of the choice as this sort of very personal,
Speaker 2: existential moment where they had to act in a way
Speaker 2: that they felt they could live with afterwards.
Speaker 1: Like you said, it's not even having a choice, it's
Speaker 1: this is what you are compelled to do because of
Speaker 1: who you are, even if there is no whistleblower type personality.
Speaker 2: Yes, exactly, who you are. You know you're the kind
Speaker 2: of person who has to act in this situation.
Speaker 1: A question that kept popping into my head as I
Speaker 1: was reading your book was do we all have the
Speaker 1: capacity to go along with unethical medical experimentation and or
Speaker 1: do we all have the capacity for whistle blowing? And
Speaker 1: I don't know if there's an answer to that, but
Speaker 1: it did make me think about what it is that
Speaker 1: allows someone to blow the whistle, or requires them to
Speaker 1: blow the whistle.
Speaker 2: I think there has to be something to the circumstances
Speaker 2: in which people find themselves that makes it more or
Speaker 2: less likely that they can blow the whistle, or that
Speaker 2: they will blow the whistle and one of them. I
Speaker 2: think if there is some sort of proximity, either as
Speaker 2: a caregiver, someone who's taking care of patients, or personal knowledge,
Speaker 2: that makes it harder for people to stay quiet. I'm thinking,
Speaker 2: for example, of John Pisondo, who was the oncologist at
Speaker 2: the Fred Hodge Cancer Center out in Seattle who blew
Speaker 2: the whistle on these lethal bone marrit transplant trials. This
Speaker 2: would have been eighties and nineties, and they eventually came
Speaker 2: to light in two thousand and one. He learned about
Speaker 2: them by virtue of being on the IRB there, so
Speaker 2: he learned about them abstractly as a result of evaluating
Speaker 2: them to try to ensure that they're ethical if the
Speaker 2: IRB were working right, which wasn't and it was his specialty.
Speaker 2: He was an immunologist and oncologist, and so he understood
Speaker 2: the studies abstractly, but he also took care of subjects
Speaker 2: in the study on the wards and that clearly was
Speaker 2: incredibly difficult for seeing two women in particular with lymphoma
Speaker 2: die as a result of being in these poorly designed,
Speaker 2: poorly thought out studies. And you know, you could see
Speaker 2: the same thing in New Zealand with Ron Jones and
Speaker 2: the Unfortunate Experiment cervical cancer trials there with the Willowbrook
Speaker 2: hepatitis studies at on Staten Island. If you're up close
Speaker 2: rather than at a distance, and particularly if you identify
Speaker 2: with in some way the institution in which the studies
Speaker 2: are happening, and you feel implicated, then that is a
Speaker 2: sort of predictor of whether or not you'll speak out.
Speaker 1: In your book, you share the story of many different
Speaker 1: whistleblowers throughout the decades, and there was one in particular
Speaker 1: that was surprising for me to learn about. I grew
Speaker 1: up in northern Kentucky. I went to undergrad at the
Speaker 1: Universe City of Kentucky, did a masters at the University
Speaker 1: of Louisville, where I learned about medical ethics, you know,
Speaker 1: took a class on it. And still your book was
Speaker 1: the first that I had heard of the radiation experiments
Speaker 1: at the University of Cincinnati just up the road. Can
Speaker 1: you take me through the story of these experiments and
Speaker 1: the whistleblower Martha Stevens and I especially was it really
Speaker 1: struck me the comparison of the memorial of whistleblowing and
Speaker 1: hidden behind a bush in contrast with the you know,
Speaker 1: the lab that bears the name of the person responsible
Speaker 1: for these unethical trials.
Speaker 2: One thing I should say about that before I start, though,
Speaker 2: is that that's one of the few places that has
Speaker 2: in recent years started to try it to make amends
Speaker 2: for the atrocities, not because of anything or anyone who
Speaker 2: had anything to do with them at the time, but
Speaker 2: a result of students largely who have who've learned about
Speaker 2: them and have essentially tried to shame the university in
Speaker 2: trying to make this right. But anyway, I'm getting ahead
Speaker 2: of myself. So the radiation experiments were these Pentagon funded
Speaker 2: studies done during the Vietnam War at the University of
Speaker 2: Cincinnati to try to figure out how American soldiers would
Speaker 2: respond to being irradiated from a nuclear weapon, and so
Speaker 2: to do that, they were exposing largely poor patients, about
Speaker 2: sixty percent of them black. At the University of Cincinnati.
Speaker 2: These are patients with cancer to total body irradiation, without
Speaker 2: telling them that it was for the military, without telling
Speaker 2: them that it was not intended to cure their cancer,
Speaker 2: and without telling them how dangerous it was and that
Speaker 2: they might die as a result. These things were going
Speaker 2: on in nineteen I guess Matha must have found out
Speaker 2: about it in nineteen seventy two, so they'd been happening
Speaker 2: for a decade or so at the University of Cincinnati
Speaker 2: when an English professor, a very young English professor at
Speaker 2: the time, Martha Stevens, found out about them. It was
Speaker 2: an article that was handed to her by someone in
Speaker 2: the political science department, and she got worked up about
Speaker 2: it and started trying to dig into it, was rebuffed
Speaker 2: at every turn by the Dean of Medicine. She was
Speaker 2: a very persistent woman. Eventually got a hold of those records,
Speaker 2: and despite having no medical background whatsoever, made her way
Speaker 2: through them, understood right away what was wrong with them,
Speaker 2: why they were unethical, and wrote it up in a
Speaker 2: kind of memorandum and held a press conference with her
Speaker 2: junior faculty association to make it public. And there was
Speaker 2: a stringer for the Washington Post in town who happened
Speaker 2: to come to the press conference. And at the time,
Speaker 2: there were hearings being held by Senator Ted Kennedy at
Speaker 2: the time about unethical experiments, largely as a result of
Speaker 2: the exposure of the Tuskegee Syphilist study at the time,
Speaker 2: and so Ted Kennedy read this piece, got interested in it,
Speaker 2: entered it into the Congressional record, and then started looking
Speaker 2: into it. And as a result of that, it was
Speaker 2: shut down. But it was kept very quiet. It was
Speaker 2: not publicized in any way, and the victims of the
Speaker 2: study were not notified. The families of the victims were
Speaker 2: not notified that their family member had been in a
Speaker 2: research study, or that it was funded by the Pentagon
Speaker 2: or anything else. That had shut it down very quietly,
Speaker 2: and that was a kind of partial success. I think
Speaker 2: for Martha Stevens and you know, her husband Jerome and
Speaker 2: the rest of the faculty members who were opposed to
Speaker 2: this thing, but not really a full victory, and they
Speaker 2: had no way of finding out who the victims were
Speaker 2: or their families, and just sort of forgot about it.
Speaker 2: But then twenty years later the entire issue became a
Speaker 2: live one again when during the Clinton administration, it became evident,
Speaker 2: as a result of some investigative work by Eileen Wilson,
Speaker 2: a reporter in New Mexico, that there was a whole
Speaker 2: series of military fund and government funded radiation experiments happening
Speaker 2: at universities all over the country, and so there was
Speaker 2: an entire commission put forward to look into this, not
Speaker 2: just at Cincinnati but all over the country, and that
Speaker 2: sort of gave new life to the story again. And
Speaker 2: as a result of that, she and a graduate student
Speaker 2: of hers began tracking down the victims families, notifying them
Speaker 2: and putting them in touch with a lawyer, and there
Speaker 2: was eventually a lawsuit against the University of Cincinnati as
Speaker 2: a result, not a terribly successful lawsuit, but there was
Speaker 2: a settlement.
Speaker 1: Let's take a quick break here. We'll be back before
Speaker 1: you know it. Welcome back everyone. I'm here chatting with
Speaker 1: doctor Carl Elliott about his book The Occasional Human Sacrifice.
Speaker 1: Let's get into some more questions. So I was wondering
Speaker 1: if you could describe to me your experience with going
Speaker 1: to the University of Cincinnati and visiting the Whistleblower memorial
Speaker 1: and what that was like.
Speaker 2: Well, so I learned that as a result of litigation
Speaker 2: against the University of Cincinnati, that the university had been
Speaker 2: forced to put up a memorial to the victims of
Speaker 2: the study. This was decades ago, now, So I decided
Speaker 2: when I went to visit Martha Stevens, that I should
Speaker 2: find the memorial. I didn't imagine that it was going
Speaker 2: to be difficult to find, and so I just started
Speaker 2: walking around looking for it, and I couldn't find anything.
Speaker 2: So I went to the front desk and asked them,
Speaker 2: and they had no idea what was talking about. Nobody
Speaker 2: in fact in the institution had any idea what I
Speaker 2: was talking about when I said, you know, the radiation studies,
Speaker 2: the Eugene Sanger's radiation studies, no idea, but they were
Speaker 2: very helpful and they started calling around anything. Anyone in
Speaker 2: the hospital had anything to do with radiation. They eventually
Speaker 2: found someone in the radio isotope lab and knew what
Speaker 2: I was talking about. She met me at the front
Speaker 2: desk and took me on this very long journey and
Speaker 2: we walked for what seemed like forever, and eventually I
Speaker 2: emerged into this sort of courtyard next to heating equipment
Speaker 2: and a parking garage. You know, I'm looking around and
Speaker 2: I'm not seeing anything but a parking ramp and you know,
Speaker 2: the heating equipment. And I said where, and she pointed
Speaker 2: to this big bush next to the hospital and she
Speaker 2: said there. And I said that looks like shrubbery to me,
Speaker 2: and she goes, no, no, no, no, I mean, oh,
Speaker 2: I guess you can't see it. It's behind that bush.
Speaker 2: And so if you kind of squeeze around behind it
Speaker 2: and put your back to the wall of the hospital,
Speaker 2: look outward. And so I did that, and there it was.
Speaker 2: It was like a two foot by two foot plaque
Speaker 2: with a bunch of names on it and it said
Speaker 2: something like in Memoriam Radiation Study, whatever the dates were.
Speaker 2: When I came back out from behind the bush, the
Speaker 2: woman said, would you like to see the Sanger Lab?
Speaker 2: And I'm like, what is the Singer Lab? She goes
Speaker 2: the Eugene Sanger, you know, the radioisotope lab. And I'm
Speaker 2: thinking Eugene Sanger, like the Eugene Sanger, the one, you know,
Speaker 2: the architect of the atrocities. But I didn't say that
Speaker 2: out loud, and she said yeah. I was like, yeah, sure, yeah,
Speaker 2: I definitely want to see the Sanger Lab. And she
Speaker 2: took me and there there was his name is on
Speaker 2: the on the door, and inside in the waiting room
Speaker 2: was this little I mean, I don't know how to
Speaker 2: describe it as say, it's like a little shrine to
Speaker 2: Eugene Sanger. It had like pictures and honors and awards
Speaker 2: and a bunch of old, like vintage medical instruments and
Speaker 2: so on. I thought to myself, Yeah, this is the
Speaker 2: way it usually works. To the architect of the atrocities,
Speaker 2: a shrine to the victims of the atrocities, a plaque
Speaker 2: hidden in the shrubbery.
Speaker 1: It's the perfect illustration. This encapsulates it all, and a
Speaker 1: lot of people might be able to recognize Tuskegee right.
Speaker 1: It's probably the most infamous example of unethical medical experimentation.
Speaker 1: It's far from the only example. But even if someone
Speaker 1: has heard of Willowbrook or the Unfortunate Experiment or Protocol
Speaker 1: one twenty six or the Cincinnati radiation experiments, they might
Speaker 1: not know the name of Martha Stevens, for example. Can
Speaker 1: you contrast that with the recognition and honors that are
Speaker 1: bestowed upon many of the perpetrators of these unethical human experiments,
Speaker 1: like Saul Krugman or Albert Kligman.
Speaker 2: Yes, that was another striking thing. So the background story
Speaker 2: to this. As a result, as you know, as a
Speaker 2: consequence of my total and utter failure to accomplish anything
Speaker 2: at the University of Minnesota, despite getting a state investigation
Speaker 2: and you know, being vindicated, I started to wonder how
Speaker 2: these things played out at other institutions, and so I
Speaker 2: started teaching this class on research scandals at the University
Speaker 2: of Minnesota. And the basic idea was, if we can
Speaker 2: get a couple of dozen of the most egregious, the
Speaker 2: most exploitative research studies that I can find the ones
Speaker 2: that I know about as a result of teaching bioethics,
Speaker 2: and put them side by side and examine them and
Speaker 2: compare them, maybe some patterns will emerge. One pattern that
Speaker 2: emerged was that whistleblowers are rare. In most of these cases,
Speaker 2: there are no whistleblowers. If they become public, it's the
Speaker 2: result of family members or lawyers or investigative reporters, or
Speaker 2: investigation by some sort of external body, not as a
Speaker 2: result of whistleblowers. But the other thing I learned, to
Speaker 2: my shock is that, or maybe I wasn't that shocked,
Speaker 2: pretty cynical, but the researchers behind the studies were in
Speaker 2: general not only not punished, not sanctioned by their institutions,
Speaker 2: they were rewarded in case after case. You know, Albert
Speaker 2: Kliegmann with the Holmesburg prison studies, Saul Krugman with the
Speaker 2: Willolbrook hepatitis studies, Eugene Sanger with the Cincinnati radiation studies.
Speaker 2: You know, I could name a half dozen others. In
Speaker 2: every case after the scandal, they were given honorary degrees,
Speaker 2: They were made presidents of their medical subspecialty society. They
Speaker 2: were given awards, lectureships were established in their name. It
Speaker 2: was almost as if the institutions of academic medicine were
Speaker 2: trying to fight back against any sort of accusation that
Speaker 2: something bad had happened here by elevating the people behind
Speaker 2: the scandals.
Speaker 1: When you consider all of the ways that whistleblowing is disincentivized.
Speaker 1: You know, we talked about why people whistle blow, but
Speaker 1: there are many different reasons to not blow the whistle.
Speaker 1: Can you take me through some of those reasons to
Speaker 1: not blow the whistle, whether that's from institutional punishment or
Speaker 1: social punishment, or the reasons that were given directly, you know,
Speaker 1: quoted directly by people who were perpetrators or bystanders of
Speaker 1: these experiments.
Speaker 2: If you ask bystanders, not that I did this, but
Speaker 2: sociologists have done this. If you go into institutions where
Speaker 2: bad things have happened, institutions where they're corruptions or abuses
Speaker 2: of some sort, and you talk to the people who
Speaker 2: were there but just stayed quiet and asked them why
Speaker 2: didn't you say anything? You generally get one of three answers. One,
Speaker 2: I would have been punished, There would have been retaliation
Speaker 2: against me. Two, it wouldn't have accomplished anything anyway. And three,
Speaker 2: I don't rat out my friends and colleagues, you know,
Speaker 2: some version of loyalty to the institution. I think there's
Speaker 2: also another one that may be especially important in academic
Speaker 2: health centers that people don't mention, which is the kind
Speaker 2: of internalized subservience to authority that you get as a
Speaker 2: result of maybe any any sort of hierarchical institution, but
Speaker 2: I think particularly an act academic medicine, which is extraordinarily
Speaker 2: authority driven, extraordinarily hierarchical, very rigid in the sense of
Speaker 2: what you should feel entitled to do. A lot of
Speaker 2: the doctor whistleblowers that I talked to mention some version
Speaker 2: of this, the almost sort of military like hierarchy that
Speaker 2: you get in academic medical centers, And I think a
Speaker 2: lot of people just feel as if it's not my
Speaker 2: place to do this. There's a sort of reflexive obedience
Speaker 2: to authority that I think almost everybody has or is
Speaker 2: socialized into having, but it gets magnified in certain kinds
Speaker 2: of institutional settings.
Speaker 1: Those institutional settings are everything to this. That's these environments
Speaker 1: where these things play out. And you opened your book
Speaker 1: with a quote that every whistleblower is an amateur playing
Speaker 1: against professionals, and it got me wondering about those professionals.
Speaker 1: Who are they, What are they what are they doing
Speaker 1: out they're honing their skills, what are those skills, and
Speaker 1: they're learning from the past how to avoid getting caught
Speaker 1: or punished. You know, tell me more about those professionals
Speaker 1: that are defeating the amateur time after time after time.
Speaker 2: That quote came from John Pissondo, the whistleblower in Seattle,
Speaker 2: and it came in the context of a conversation that
Speaker 2: we had. I think it was our very first conversation,
Speaker 2: and I think he was trying to express something about
Speaker 2: how little he knew when he began trying to expose
Speaker 2: the abuses. There a lot of whistleblowers that I talked
Speaker 2: to only come to think of themselves as whistleblowers after
Speaker 2: the fact. It's not as if many of them anyway
Speaker 2: think of themselves as blowers or know anything at all
Speaker 2: about blowing the whistle, or how to protect themselves, or
Speaker 2: what to do, or what they can expect, or anything
Speaker 2: at all about what they're trying to do. They're just
Speaker 2: ordinary people who have seen something bad and are trying
Speaker 2: to figure out how to stop it or how to
Speaker 2: expose it. But what they very soon find if they're
Speaker 2: in an institution is that they might be amateurs, but
Speaker 2: the people at the institution who run the institution are
Speaker 2: not amateurs at all. They've been through this many times before,
Speaker 2: because any institution, at least any academic medical institution, will
Speaker 2: have seen a lot of bad things happen over the years.
Speaker 2: It's sort of the nature of the institution. And they
Speaker 2: know exactly what to do. And I'm talking here about
Speaker 2: the risk managers, the general Counsel's office, the crisis managers,
Speaker 2: the communications team, the deans, the vice presidents, everybody who
Speaker 2: is there at the institut who has been through this,
Speaker 2: and their mission is to protect the financial interest in
Speaker 2: the reputation of the institution. And job one is discredit
Speaker 2: the whistle blower. That happens almost as a matter of routine,
Speaker 2: because unless people think ahead, it can be a lone
Speaker 2: whistleblower against this entire institution. And if the institution can
Speaker 2: discredit the whistleblower, you know, Oh they have mental health problems.
Speaker 2: Oh there's some sort of financial gain that they're going after.
Speaker 2: Oh they've always been a problematic person. Oh they're carrying
Speaker 2: a grudge because their career is failing. Some way of
Speaker 2: discrediting them and making their accusations sound hollow or empty
Speaker 2: or unbelievable in some way. Then they have won, and
Speaker 2: that's something that it seems like every whistleblower has to
Speaker 2: learn learn for themselves for the first.
Speaker 1: Time when you learn about these situations, you learn about
Speaker 1: these unethical experiments and whistleblowers. And it's tempting to think
Speaker 1: that if we were faced with a similar scenario, if
Speaker 1: each one of us was faced with the scenario, we
Speaker 1: would object and we would refuse to go along with things.
Speaker 1: And maybe that's true for someone and maybe it's not.
Speaker 1: In your book, you talk about a couple of experiments
Speaker 1: and how that reflects on roles of obedience and social
Speaker 1: dynamics and power dynamics, specifically Milgram's nineteen sixties obedience experiments
Speaker 1: and then the twenty twelve Amsterdam whistleblowing experiment. What do
Speaker 1: those show us about the difficulty in blowing the whistle
Speaker 1: and what people actually will do or some of the
Speaker 1: barriers in place to prevent them from blowing the whistle.
Speaker 2: Well, what it shows is that most of us are
Speaker 2: self deceived about our ability to resist the demands of obedience.
Speaker 2: The Amsterdam study, the twenty twelve study was modeled on
Speaker 2: the Milgram studies. The Milgram studies being those Yale studies
Speaker 2: done by Stanley Milgram in the early sixties, in which
Speaker 2: nearly sixty five percent of subjects were willing to obey
Speaker 2: the commands of a man in a white coat who
Speaker 2: was an actor but they thought was a legitimate scientist,
Speaker 2: to give what they thought were potentially lethal electrical shocks
Speaker 2: to an innocent victim. The new version was trying to
Speaker 2: figure out how many people would blow the whistle on
Speaker 2: a study that was clearly unethical and dangerous given the chance.
Speaker 2: And so what they did was this was a study
Speaker 2: they did it. It was university students, Dutch university students,
Speaker 2: and the setup was there was a distinguished scientist and
Speaker 2: they were introduced to him, actually a man in a
Speaker 2: white coat who's just an actor, and he explained to them,
Speaker 2: I need some help recruiting subjects into a sensory deprivation
Speaker 2: experiment that I'm doing, and I'd like your help. And
Speaker 2: so he said, here's what we do. We take these subjects,
Speaker 2: we put them in a sort of sensory deprivation chamber,
Speaker 2: a kind of pod where they can't hear anything and
Speaker 2: they can't see anything, and then we just keep them
Speaker 2: there and measure their brain activity and see what happens,
Speaker 2: and he says, you know, we did this once. We
Speaker 2: had a pilot's study and it was a little disturbing.
Speaker 2: It didn't go well. You know, they started to become
Speaker 2: psychotic and delusional and they panicked, and you know, they
Speaker 2: were begging, please let me out, please let me out.
Speaker 2: Well we couldn't let them out, of course, because that
Speaker 2: would have ruined the study. But you know, we've made
Speaker 2: some adjustments and we're going to try it again, and
Speaker 2: we'd like your help. And all we'll need for you
Speaker 2: to do is write an email to at least four
Speaker 2: friends and acquaintances telling them about this study, using words
Speaker 2: like amazing, incredible, superb So the idea was how many
Speaker 2: people would do this and how many would blow the whistle,
Speaker 2: And so they gave them the opportunity to blow the whistle.
Speaker 2: They actually gave them every opportunity to resist. The man
Speaker 2: in the white coat left the room, so they weren't
Speaker 2: face to face with any sort of authority figure. They
Speaker 2: were given a form that could be delivered to the
Speaker 2: university ethics committee. They said, the ethics committee hadn't approved
Speaker 2: this yet. So if you have any concerns about this
Speaker 2: study whatsoever, just write them down here anonymously, they'll be
Speaker 2: delivered to the Ethics Committee and there'll be no way
Speaker 2: to trace it back to you. And they had two groups.
Speaker 2: In the first group, they presented them with this scenario,
Speaker 2: purely in theory, if you were in this situation, what
Speaker 2: would you do? And in that situation, almost every one
Speaker 2: of them something like ninety six percent said, you know,
Speaker 2: I would resist, or I would blow the whistle or both.
Speaker 2: But in the actual study, when they were actually confronted
Speaker 2: with this fake scientist, seventy seven percent of them complied
Speaker 2: with the experiment, and only nine percent blew the whistle.
Speaker 2: So like ninety six percent said they would blow the
Speaker 2: whistle and only nine percent did blow the whistle. For me,
Speaker 2: The interesting thing about this is that if you go
Speaker 2: back to that those sociological studies that I mentioned before,
Speaker 2: where people go in and ask bystanders who said nothing,
Speaker 2: why did you say nothing? And they say, well, I
Speaker 2: would have been punished, it would have been feudal. I
Speaker 2: don't rent out my own group. In this case, there
Speaker 2: was no punishment that it would not have been feudile,
Speaker 2: and there was no group to rat out, and still
Speaker 2: almost nobody blew the whistle. The lesson that those researchers
Speaker 2: drew from this is that it's all about obedience. It's
Speaker 2: all about obedience to authority. My conclusion looking at that
Speaker 2: one and looking what people say, is that people who
Speaker 2: don't blow the whistle are in a lot of ways
Speaker 2: self deceived about why they don't blow the whistle. They
Speaker 2: think it's because they would be punished. In fact, even
Speaker 2: if there were no chance of punishment, then most people
Speaker 2: would not.
Speaker 1: I mean, that is it's grim. It is a little
Speaker 1: bit crushing, but it is also the reality, and it
Speaker 1: kind of begs the question of like, well, how can
Speaker 1: we make things better? And there have been occasions where
Speaker 1: whistle blowing has led to reform, But it seems I
Speaker 1: think naive, especially considering these experiments, to think that unethical
Speaker 1: experimentation is a thing of the past. What do you
Speaker 1: think are some of the biggest weaknesses in this system
Speaker 1: that could be modified or improved to at least protect
Speaker 1: from these harms or support whistleblowers.
Speaker 2: One of the big problems that's specific to blowing the
Speaker 2: whistle on unethical research that could be fixed is that
Speaker 2: it's not clear to whistleblowers who they should blow the
Speaker 2: whistle too. So the oversight system in this country is
Speaker 2: extraordinarily porous and is extraordinarily opaque. And so if someone
Speaker 2: sees something bad happening in a research study and they
Speaker 2: want to blow the whistle, typically where they would go
Speaker 2: would be the IRB at their institution or whatever. IRB
Speaker 2: has approved the study. That's where complaints are supposed to go.
Speaker 2: But what you find if you actually try to do
Speaker 2: this is that the RB has approved the study, they
Speaker 2: may even know about the abuses, and they are complicit
Speaker 2: in some way, so blowing the whistle to them does
Speaker 2: no good. They've already approved the study, they have a
Speaker 2: stake in the study, you know, going ahead as it is,
Speaker 2: and so very often they'll do nothing. And then the
Speaker 2: question is, well, who is overseeing the IRBs? And that's
Speaker 2: a very complicated bureaucratic question, but let me just the
Speaker 2: upshot is there is very little oversight of IRBs and
Speaker 2: very little place to go outside of the IRB if
Speaker 2: you're getting nowhere with them. The other difficulty is that
Speaker 2: any kind of IRB decision proceedings is secret, and so
Speaker 2: just getting access to what the IRB has found or
Speaker 2: what their decisions are is extraordinarily difficul called. It is
Speaker 2: easier at public institutions like a public, state funded medical school,
Speaker 2: but it's almost impossible at private universities and in any
Speaker 2: university or research institution that's contracted with a for profit
Speaker 2: IRB to review their trials.
Speaker 1: For profit IRB. Is That's that not great? Not great
Speaker 1: at all. I'm curious about your thoughts on the role
Speaker 1: of whistleblowers in this administration. You know, you write that
Speaker 1: whistleblowers need to believe that other people will stand up
Speaker 1: for what's right. But the Trump administration has shown repeatedly
Speaker 1: that that's not the case, that whistleblowing is consistently quashed,
Speaker 1: even more and more in that standing up for what's
Speaker 1: right doesn't seem to mean much these days. Do you
Speaker 1: anticipate fewer whistleblowers because there's less or no hope of
Speaker 1: the information changing anything, or do you expect there to
Speaker 1: be any impact on the rate of whistle blowing.
Speaker 2: The fate of whistleblowers in this administration is very dark,
Speaker 2: I mean really dark. I mean it's interesting if you
Speaker 2: go back and look at, for example, the one of
Speaker 2: the earliest books on whistleblowing from the early seventies by
Speaker 2: Taylor Branch and Charles Peters. This was the era in
Speaker 2: which the term whistleblowing was being coined, and it was
Speaker 2: a new phenomenon. You had people like Daniel Elsberg and
Speaker 2: Frank Serpico at the time, but it was kind of new,
Speaker 2: and they were trying to figure out some way of
Speaker 2: putting a positive moral valence on the language, because there
Speaker 2: didn't seem to be any sort of morally praiseworthy term
Speaker 2: for someone who did this. There were terms like trader
Speaker 2: and judas and rat and snitch, but nothing that they
Speaker 2: gave it a sort of positive spin. And one of
Speaker 2: the things they wondered was whether in the future there
Speaker 2: would come a time when there would be so many
Speaker 2: whistleblowers that it would do no good. I mean, the
Speaker 2: whole idea, the whole hope for the whistle blower is
Speaker 2: that someone's going to listen to the whistle. But if
Speaker 2: you have many, many whistleblowers blowing the whistle every day,
Speaker 2: it's almost impossible to pay any attention to any single
Speaker 2: one of them. And it feels like that is what
Speaker 2: we have now. We've got a lot of whistleblowers and
Speaker 2: also an administration that is intent on absolutely making their
Speaker 2: lives miserable in every way. So I think in this
Speaker 2: sort of environment, it would take an extraordinary amount of
Speaker 2: courage to speak out.
Speaker 1: Yeah, and to trust that someone will hear that whistle
Speaker 1: being blown and do something about it. I kind of
Speaker 1: want to circle back to how we started off this conversation,
Speaker 1: which was your personal experience with whistleblowing, and this whole
Speaker 1: book seems like it must be it must have been
Speaker 1: very deeply personal to write, and I'm curious what was
Speaker 1: that experience like for you, you know, did you find
Speaker 1: it to be painful, therapeutic, educational, discouraging, I mean, all
Speaker 1: of the above. I'm wondering about your journey, your personal
Speaker 1: journey in writing this book.
Speaker 2: Some of the easiest interviews I've ever done. I felt
Speaker 2: like I had something in common with every one of
Speaker 2: these people. I felt a kind of sense of solidarity
Speaker 2: with them, you know. To be honest, I wished, you know,
Speaker 2: I wished that they had been able to meet one another.
Speaker 2: Some of the whistleblowers, by the time that I talked
Speaker 2: to them, were in their eighties. Some of them have
Speaker 2: died at this point. So Peter Buxton, the Tuskeiki whistleblower
Speaker 2: died two years ago, and ron Ja Owns the last
Speaker 2: of the Unfortunate Experiments whistleblowers died last year, and Jerome
Speaker 2: Stevens's Martha Stephen's husband died a couple of years ago.
Speaker 2: And it sort of saddens me that it was impossible
Speaker 2: not to get them all in a room together somehow,
Speaker 2: because I feel as if it would have been useful
Speaker 2: for them in therapeutic and that they would have found
Speaker 2: some sort of sense of solidarity by getting to know
Speaker 2: other people who have been through similar experiences. The other
Speaker 2: thing that came of working on the book I think is,
Speaker 2: I mean, everybody I think it goes through these sorts
Speaker 2: of experiences nis to come up with some sort of
Speaker 2: story to tell themselves, to explain the episode to them,
Speaker 2: in order to be able to put it behind them.
Speaker 2: I think what's very often troubling for people and why
Speaker 2: it becomes such a you know, such a deep wound,
Speaker 2: is that there is no good publicly available story that
Speaker 2: their experience fits into. It all seems sort of unsatisfactory
Speaker 2: in some way, and it doesn't fit into the David
Speaker 2: and Goliath narrative because very often they feel like they've
Speaker 2: lost they haven't slain Goliath. It's very easy, I think,
Speaker 2: if you've really accomplished very little to come away from
Speaker 2: the experience feeling really demoralized, as if you were duped
Speaker 2: in some way, that you're the chump. Right, everybody else
Speaker 2: understood that trying to speak out about this was going
Speaker 2: to result in something terrible, that you're going to ruin
Speaker 2: your career, that you were going to lose everything, and
Speaker 2: you were the only one dumb enough to go through
Speaker 2: it anyway. And so by trying to make some sense
Speaker 2: of these stories and telling them within this larger framework
Speaker 2: of honor and shame, and honor stories or stories in
Speaker 2: which you don't necessarily have to succeed. What's important in
Speaker 2: stories of honor is that you be able to respect
Speaker 2: yourself when it's over, not that you necessarily vanquish the enemy.
Speaker 2: That that can possibly be on a sort of deeper level,
Speaker 2: a more satisfying story, a story that will help people
Speaker 2: make sense of what they've done in a way that
Speaker 2: they can live with.
Speaker 1: I want to thank you so very much, doctor Elliott.
Speaker 1: I mean, your work is truly enlightening, inspiring and so necessary,
Speaker 1: and I really appreciate you taking the time to chat
Speaker 1: with me today.
Speaker 2: Well, thank you, I appreciate it. Thanks for inviting me.
Speaker 2: These are terrific questions. I'm grateful for that.
Speaker 1: A big thank you again to doctor Carl Elliott for
Speaker 1: taking the time to chat with me. If you enjoyed
Speaker 1: today's episode and would like to learn more, check out
Speaker 1: our website this podcast will kill You dot com. We're
Speaker 1: I'll post a link to where you can find the
Speaker 1: occasional human sacrifice, medical experimentation, and the Price of Saying No,
Speaker 1: as well as a link to doctor Elliott's website where
Speaker 1: you can find his other great work. And don't forget
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