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The Occasional Human Sacrifice: A Conversation with Carl Elliott · Health Ethics Podcast

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Welcome to Health Ethics, a series of conversations with leading experts about ethical considerations
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associated with health and healthcare, both locally and globally. I am Brian Pilkington,
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Professor of Bioethics in the Department of Medical Sciences at the Hackensack Meridan School
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of Medicine. This series, like its predecessor, which focused on the COVID
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nineteen pandemic, relies on the idea that challenging ethical issues are best addressed by
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folks from diverse backgrounds practically reasoning together, and complements the Health Ethics series with
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its panel of leading experts from medicine, nursing, politics, economics, philosophy
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and the law. Thank you and enjoy the episode Welcome to the Health Ethics
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Podcast. I am Brian Pilkington, Professor of Bioethics at the Hackensac Gritian School
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of Medicine, and I have the great pleasure of speaking with Carl Elliott,
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author of The Occasional Human Sacrifice. New book out which is challenging, harrowing,
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but I think a phenomenal read, one that'll keep you up at night,
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and I think, yeah, it really ought to be on the bookshelves
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of everyone engaged in medical practice. Doctor Elliott grew up in Clover, South
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Carolina, where his father was a family doc and his mother was a librarian.
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He attended Davidson, then the Medical University of South Carolina, and then
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Glasgow University in Scotland, training first in medicine, then in philosophy. After
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postdoctoral positions at the Chicago University of Otago and the University of Natal Medical School,
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he joined the faculty of McGill in Montreal and eventually moved to the University
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of Minnesota in nineteen ninety seven to join the Center for Bioethics, where he
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remains and is currently professor in the Department of Philosophy. Doctor Elliott is the
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recipient of a Gougenheim Fellowship, a National Endowner for the Humanities Public Scholar Award.
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They carry in McGuire Chair and Ethics and American History at the Library of
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Congress, a Resident Fellowship at the Rockefeller Center in Bellaggio, and a Weatherhead
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Fellowship at the School of Advanced Research in Santa Fe. His writing appeared in
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The New Yorker, The Atlantic, The New York Review of Books, New
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York Times, Mother Jones, and the American Scholar, among other places,
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and he's been a visiting faculty member at the Institute for Advanced Study at Princeton,
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University of Sydney and the University of Otago, where he's an affiliate in
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the Bioethics Center. So thank you, Carl so much for being here.
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Let's get into it. Carl, Welcome to the Health Ethics Series podcast.
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I'm super excited that you're here. We're going to talk about your new book,
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The Occasional Human Sacrifice, Medical Experimentation, and the Price of Saying No,
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which is just out from W. W. Norton. I've read it.
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It's harrowing. It kept me up some nights, but a great read.
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And actually I was thinking though, when I was looking to sort of
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get the full title, all the information about the books, we can plug
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it on the website. I noticed it's being classified as Health General and Medical
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Reference, which I thought was interesting. And just yesterday, and I'll stop
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talking soon, I was talking with a doc, a more seasoned doc,
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who doesn't know what to do with all these medical textbooks because no one wants
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them anymore, because libraries don't have books. And I thought, if I
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had to give someone one medical reference with the book. It might be this,
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and so I say that both for you and for the listeners, so
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they sort of can pick up on my bias in favor of the text.
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But thank you very much for hopping on the podcast. Big obvious first question
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is what motivated you to write the book. Well, that's kind of a
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long story. I'll try to give you the short version. I learned about
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a suicide in a clinical trial here at the University of Minnesota in two thousand
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and eight. I was actually on sabbatical at the time. I was in
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South Africa, and a friend of mine, Paul Toasto, who was a
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reporter for the Pioneer Press, the Saint Paul Pioneer Press, sent me a
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series by email that he and his colleague Jeremy Olsen had written by a clinical
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trial at the University of Minnesota where I work. It was unbelievably disturbing and
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harrowing. The case, as they laid it out, was a young man.
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His name was Dan Markinson. I believe he was twenty six at the
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time. It had experienced a psychotic break. He was delusional, he was
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communicating with demons and angels. He had presented to the emergency room at our
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teaching hospital, partly because he was mentally ill, but partly because he was
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threatening to kill people, including his mother. He was judged of the delusional
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psychotic incompetent to consent to take neuur eliptic drugs, given neuroelliptics, and then,
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after being put on a locked unit and placed under a civil commitment order,
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was enrolled in a clinical trial of antipsychotic drugs over the objections of his
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mother, who should have been making those decisions herself. Since her son was
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psychotic, she didn't want him in a clinical trial. She tried desperately to
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get him out. He was discharged in that trial to a halfway house in
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Saint Paul, where he continued to get worse. She became increasingly upset alarmed.
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She was worried that he was going to be violent. She was worried
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that he might kill himself. She tried desperately to get him out of the
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study. She was calling the study coordinator. She was writing letters to the
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Department of Psychiatry. She was turning up at the department, but just could
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not get anyone to pay attention to her. Eventually, she left a voice
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message on the study coordinator's voicemail saying, look, do we have to wait
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until he kills somebody or kills himself before anybody does anything? And she got
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no reply. And three weeks later he tried to decapitate himself with a box
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cutter, and his body was found in the shower of the halfway house where
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he was staying, along with a note that said I went through this experience
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smiling. So I was obviously there's I mean, just as the case was
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laid out in the Saint Paul Pioneer Press, there were so many red flags
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there. I even mentioned a number of them. But I was in South
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Africa for another month or two. But when I got back to the University
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of Minnesota started asking questions, and nobody wanted to talk about it. Nobody
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was interested in the case. Many people hadn't even heard about it even then.
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This would have been in the fall of two thousand and eight, and
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I just could not understand this. I mean, you know, it had
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happened right here at the University of Minnesota. You know, I worked in
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the Bioethics Center. I'd been on the IRB for a number of years.
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I worked on psychia ethics, and my concerns about this thing were just when
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I talked to the administration and to my friends in the Department of Psychiatry,
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were just completely dismissed. You know, I just felt absolutely patronized and you
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know, kind of insulted. And it eventually, I mean, what I
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you know, I worry at that point was, you know, I wanted
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an investigation of this case, like a legitimate investigation of this case, but
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also wondered, you know, has this happened to others at the university,
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And it seemed like other research subjects, and it seemed as if this should
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be something that the University of Minnesota should be worried about too and should look
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into. Eventually, I met Mary Weiss, the mother of the young man
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who killed himself. She was very open to letting me see all the medical
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records that she had. She had filed a lawsuit which had been dismissed on
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grounds of immunity. Often offered to let me see her lawyer and see everything
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that she had, and she said, you know, look, just make
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up your mind for yourself. So that's what I did, and everything that
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was in that Saint Paul Pioneer press article checked out, and it eventually became
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clear to me that this case was just going to be forgotten and the possibility
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of other misconduct in the Department of Psychiatry or by the IRB was going to
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be forgotten unless I did something, And so I eventually wrote about it for
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Mother Jones Magazine, which did no good whatsoever. There had at that point
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there had been more information that had come out about the sponsor of the study,
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Astra Zeneca. There had been litigation, fraud litigation, and it turned
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out that there were other issues involving other studies and fraudulent marketing and rigging and
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burying of studies that were also leading back to the University of Minnesota. So
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I put those two pieces together and that's what I wrote about from Mother Jones
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Magazine. Someone'll be familiar with the Dan Markinson case, but for those who
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haven't, I think that's a really good, helpful opening salvo. And then
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this leads to sort of more work in the space public advocacy that you eventually
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turn to and not giving you know, the whole book away. There's an
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excellent book on whistle blowing. So I'll jump and ask a broader question and
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then if you want to fill in any gaps in the story, or you
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know, jump in with anything that folks who maybe haven't yet, but of
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course we'll read the book, haven't gotten. This motivates you and then you
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The book surveys a variety of research ethics violations across the globe, and I'm
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curious, this is sort of the central philosopher, that sort of big philosophical
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question, our failures to protect research subjects, or maybe more positively, are
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the work of whistleblowers? A human phenomenon? Is this something attached to particular
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places, times and locations? I mean, is this just bad everywhere?
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I mean? What's it was powerful to sort of track a number of the
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different experiments that you that you did in the violation. So what do you
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think about humanity as a whole? That's a big question. So let me
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just back up a little bit. What led to the book was basically the
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sense of demoralization and failure and despair after all those years of advocacy, which
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involved anything that you can imagine and think of. We tried it here at
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the University of Minnesota. There's a small group of us. Lee Turner,
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my colleague in the Bioethics Center, and then Nikki Jerry, a nurse safety
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specialist at Fairview Hospital, and then eventually former Governor of Minnesota Arnie Carlson,
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and protests, petitions, vigils, letters to alumni, letters to donors,
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anything that you can possibly imagine. We tried file complaints to every possible agency
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you can think of, internal to the university, at Fairview Hospital, federal
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state. We got nothing, and eventually, largely because of the help of
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Arnie Carlson, the former governor, we did get a state investigation by a
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washdog agency called the Office of the Legislative Auditor. It was very thorough detailed
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and vindicated pretty much, I would say, everything that those of us advocating
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on behalf of Mary Weiss had seen from the beginning, and most of which
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had been there, you know, in two thousand and eight. This was
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twenty and fifteen, so it took seven years to get that investigation. And
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you know, when that investigation came out, that would have been where you
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know, the movie or the book ended with a kind of triumph at the
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end, right, But it didn't end because the investigation that you know,
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that report really did very little. I would say almost nothing it. You
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know, it forced the university to suspend psychiatric drug studies for a period of
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time, but you know, no one was ever disciplined, no one was
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ever punished. Mary Weiss was never compensated. There was never an apology,
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And to be honest, I think it made people at the university resent me
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and Lee Turner and Nikki Jerry even more than before. And then the question
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is is the way is this the way it always works out? We get
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what we were working for all this time, and then it was really nothing.
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That's what led me to first teaching a class on research scandals, to
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kind of look at a bunch of scandals side by side, and then to
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write the book, which was kind of prompted by the realization teaching the course
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that whistleblowers are actually very rare when research. When abuses are exposed, it's
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usually not because there was a whistleblower. It's usually the case that doctors,
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nurses, study personnel, administrators know that subjects are being abused mistreated to see
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they know it for years, sometimes they even know it for decades, and
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they don't know anything at all about it. They just keep quiet. And
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I wanted to look at the people who did step out of line, the
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rare few, and find out out why did they do it, how did
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things work out for them? Were they successful? And to be honest,
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part of what that makes the book so demoralizing is that their happy endings are
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really very rare. My case is not unusual at all. That's generally the
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case. And you know, even whistle blowing cases in which from the outside
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people look and say, hey, that was a good result, that was
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a success, which is what I think a lot of people think when they
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look at the case here at the University of Minnesota. Once you start digging
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deeper, you find out, you know, there really wasn't much of a
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victory there at all. Yeah, so it's unds like in most cases,
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things don't go super well for the whistleblowers. Could you say something about how
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challenging it is for whistleblowers or you know what sort of your you know,
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a line or two on the honor ethic. Well, the epigraph to the
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book is something taken from one of the whistleblowers. I talked to John Persanda,
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who's an oncologists who blew the whistle on some experimental lethal experimental bone transplant
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studies a study at the Fred Hutchinson Cancer Center in Seattle who said every whistleblower
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is an amateur playing against professionals. Well, you have to understand, I
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mean, whistleblowers are not activists. They're not professionals in any way. They're
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not investigative journalists in general. They are people who just find themselves in a
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horrible situation in which they have knowledge that they feel they can't keep to themselves
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because in my book, research subjects are being mistreated and in some cases many
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cases dying as a result, and they in general sort of stumble around in
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the dark trying to figure out what to do. They don't know how to
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blow the whistle, they don't know who to blow it to, they don't
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know how to talk to the press. It's very difficult to figure out who
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you should even now, much less back in the seventies. Should you should
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report research misconduct too? The answer is not at all obvious, and even
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if you think it's obvious, it's not at all effective, and so it
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often involves just years of failure and frustration and in some cases just increasing desperation
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as a whistleblower is trying to try to get a study stopped and can see
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patients dying and no one will listen to them, And so that is just
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an incredibly demoralizing and disillusioning experience, because the general thought the whistleblowers have is,
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look, every if other people know what I know, they'll be as
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outrage as I am, and someone somewhere will stop this. And you know
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that almost never happens. People just assume their friends are going to stand by
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them, and very often that doesn't happen. They assume their colleagues at work
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are going to take their side, and that almost never happens, and they,
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you know, are acting for reasons of conscience, and they're treated like
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judas, like traders, and this comes as a as a huge sort of
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existential blow, and afterwards it's hard for a lot of them to see the
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world the same way an anymore, because all the values, all the beliefs
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that they have sort of built their moral universe on, turn out to be
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wrong. So, you know, it's it's not a happy story for a
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lot of whistleblowers. And even one of the things that I found really interesting
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and a little bit surprising is that many of them are, you know,
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even decades later haunted by this, you know, tormented by it, think
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about it every day. You know, even whistleblowers that I talked to were
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in their eighties now and this happened forty fifty years ago, can't get over
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it. And they very often if you ask them, well, why did
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you do it? Their answer will be some variation at some point of how
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would I hold up my head up if I said nothing? How would I
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look at myself in the mirror if I said nothing? How would I face
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my kids? How would I face my family? Which is a kind of
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interesting non explanation. And I what led me into the discussion of honor that
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you referenced is that it occurred to me that what they were getting at with
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these kind of explanatory non explanations was some version of, well, how could
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I respect myself if I didn't say something? How could I continue to respect
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myself if I didn't do what I think was the right thing? And you
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know that concept respect and self respect, your obligations to yourself, to your
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conscience, to your own moral code, that's sort of at the heart of
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of the honor ethic, And so part of what I did, I mean
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it was an interpretive task, not a you know, not a normative recommendation,
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was to try to explain what the honor ethic is and why I felt
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as if I could hear it, hear echoes of it anyway in the stories
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and the explanations that you know that I was getting from these whistleblowers and sort
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of. So I think that that idea, at least as you interpret it
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and explain it in the book The Honor Ethic, I think strikes lots of
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folks as fairly intuitive. You know, you have things like well, I
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just whether it's that I couldn't look my kids in the face, or I
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was raised in this particular way, or like well, you know, they're
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just some things you don't do, those kinds of you know. I like
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the non explanation explanations helpful, But I think that resonates with a lot of
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future physicians, at least very early on, when I chat with them about
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these kinds of things. I'm trying to put that idea, and that it
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sort of resonates with lots of folks. I'm trying to put that idea and
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sort of connected up with the many many research abuses that occur and the idea
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that some folks might have given up along the way, potential whistle blowers,
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or people are concerned, or folks who see something that's wrong and then whether
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it's the bystander effect or something else, saying, well, you know,
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Carl would have called, so I don't have to call because if he's not
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calling, are we I mean, there's a big humanity question. Are we
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all failing? Are there so many more research abuses? What happens to good
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future physicians who never in any case you talk about all the hypothetical early phase
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one cases, they're all saying, no, no, we have to stop
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this. In your work on this, in your many years you're living through
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it, your many years of reflection, your work on whistle blowers, any
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recommendations for future physicians, or any explanations about how we sort of just not
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we I'm not a physic, but how folks don't get there? You know.
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I think there is a tendency, maybe are a particularly American tendency to
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look for individualistic explanations for actions. There must be something wrong with the character
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of people who can just watch this stuff and not say anything, And there
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must be something so sort of heroic and exceptional about the people who do speak
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out, and I actually don't think that's the case. One of the things
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that I'm often asked is, you know, can you see anything in common
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with the whistleblowers you talk to? And honestly, I can't. They are
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very different people. I'm not even sure what a conversation between between them would
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even sound like. I mean, and you know, I should also say
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sociologists. Social psychologists have tried to study this, you know, is there
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any way to pick out whistleblowers, you know, who's going to blow the
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whistle in a particular situation, who's going to stay silent? In general?
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They can't find anything where social psychologists can find answers to this is in the
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situation that prompts people to speak out. So, for example, there's a
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very kind of small thing. And I'm not entirely sure I would journalize by
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this, but one of the things that, you know, that struck me
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about the whistleblowers that I talked to is that very often the people who did
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speak out spoke out or at least prompted to sort of take the leap by
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virtue of contact with someone who was being mistreated, who had been enrolled in
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the study Kids at Willebrook, Patience for John Passondo at the Fred Hutch,
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you know, patience for these four whistleblowers at the Karolinska Institute, for Ron
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Jones at you know, the National Women's Hospital. It is way easier to
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sort of look away and forget about abuses if you're just looking at pape like
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an IRB does, if you have no contact at all with the actual situation
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and seeing the people who are suffering, it's just a whole lot easier to,
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you know, to dismiss the other thing. And this comes from you
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know, Stanley Milgram's obedience experiments. One person alone finds it very difficult to
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speak out. One person alone finds it very difficult to survive psychologically the abuses
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that they will undergo as a whistle blower. Just two people makes a huge
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difference. It makes, you know, a difference in whether people are likely
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to speak out, and it makes a difference in their ability to survive the
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ordeal, partly because it's much harder to discredit a group of people than it
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is to discredit a single whistle blower. This is something that the Karlinska Institute
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whistleblowers realize that the beginning. You know, there were three surgeons and a
23:02
critical care doctor and they made the decision right at the beginning. Look,
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we're doing all of this together as a group, because nobody could do it
23:08
by themselves. That was a very savvy decision, and it helped them,
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help them survive the ordeal, and it helped them, you know, survive
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the efforts to discredit and discipline them. I guess my message, you know,
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if there's there's not much hope in this book. To be honest,
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it's a very demoralizing book. I mean, nobody should read this expecting some
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sort of triumph of the human spirit or you know, heroic tale or anything
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like this. It's it's, i think, incredibly demoralizing and might well possibly
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deter people from speaking out about wrongdoing. But the one thing I would say,
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if there is a you know, a tiny sliver of light in there,
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it's that solidarity is everything, a community is everything. This is not
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something that anybody should try to do by themselves. And you know, those
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of us like me who are lucky enough to sort of start out alone and
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then have other people join up. If you were that sort of person,
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you were incredibly fortunate. So I want to shift a little bit in thinking
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because those of us who from afar right, not quite the R and B,
24:22
but haven't had as direct contact with research violation. Suppose you had an
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opportunity to affect change, right, did they appoint you the head of academic
24:33
medicine or something like that, or you know cases we've run with students,
24:37
they're sort of the the expert consultant, and you know, you push some
24:41
of the red tape and complications aside and that they actually will be listened to.
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Is there something in particular that you would try to change about academic medicine
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which might enable better protection of research subjects? Or is that just a badly
24:55
post question. So one of the things that struck me. Not every whistleblower
25:00
that I talked to in the book is a doctor, but a lot of
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them are doctors. And I can't think of a doctor that I talked to
25:11
who wasn't incredibly bitter and angry at academic medicine and their own experience in academic
25:19
medicine or the way they were trained as medical students or as residents. I
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mean, their complaints differed, but I think almost nobody was happy with it.
25:30
One of the things that comes through in a lot of the stories is
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a complaint about the hierarchy of academic medicine and how rigidly stratified the status system
25:45
is, and how much power the people at the top have, almost like
25:52
absolute monarchs when you're talking about the dean of medicine, and how little power
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the people at the bottom have, and how that deters the people. Look,
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the people at the top never blow the whistle. I mean, I
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can't think of ever like not in academic medicine. But you know, in
26:08
any field, it's always people in the middle or at the bottom. And
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if you have this sort of rigid, hierarchical, authoritarian cast system in the
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hospital, then it becomes very difficult for people to speak out against those when
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the abuses are being carried out by the people above them, and when you
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know their superiors have such power to destroy them. I remember once actually this
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is only peripherally related, but I remember giving a talk once at a medical
26:41
school in Texas, something totally different, and a guy came up to me
26:45
afterwards. He was a medical student, and he just said, you know,
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before I went to medical school, I was in the military, and
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the hierarchy in medical training is way, you know, more rigid and authoritarian
27:02
than anything that I saw in the military. Why didn't somebody tell me about
27:06
this, you know, wow? And he was really chafing against it.
27:08
I don't know. I don't have any experience of the military, so I
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don't know how how you know, generalizable that comment is, but it did
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sort of stick with me. I'm trying to think back on, you know,
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the various you know, complaints that that I got from different whistleblowers.
27:27
Another one that that I can remember is talking to Oscar Simonson. He was
27:33
a cardiovascular surgeon at the Karolinski Institute and one of the four whistle blowers who
27:37
exposed the crimes and I say crimes because he is going to prison soon of
27:44
Paolo Macchiarini, the sort of con man fraud surgeon who was implanting lethal synthetic
27:52
tracheas into patients who almost universally died as a result. The Karolinski Institute is
27:56
a very elite institution. It's sort of like the Harvard or Stanford or Hopkins
28:02
of Europe. They give away the Nobel Prize in medicine, and Oscar said,
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you know, I'm the only one of the whistleblowers who did all my
28:10
training here from a medical student onto faculty. And I'm telling you it is
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like joining a cult. He says. I get what you're saying about your
28:18
medical school, you know, I get that other people have complaints, But
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I'm convinced that no place is as closed and narrow and resistant to change and
28:30
so absolutely focused on the Nobel Prize above anything else as this place. I
28:38
think there's there's a way to train people there in medicine that doesn't necessarily involve
28:48
all the things that medical training does, the you know, the hazing,
28:51
the bullying, the kind of narcissism, and the jaded attitudes that develop over
28:56
time. I think it could be done better. Mike Wilkins, he was
29:00
one of the whistle blowers at the Willowbrook State School, which was a snake
29:07
pit of an institution for mentally disabled children, where Saul Krugman was injecting the
29:15
kids with hepatitis A and hepatitis B. And Mike was one of the whistleblowers
29:21
exposing the many abuses there. And I remember he said to me, you
29:26
know, I think the way to train doctors would be to have everybody start
29:30
at the very bottom like I did, and maintenance, working as an orderly
29:34
and then just sort of gradually work yourself up, and by experiencing what it's
29:40
like to be at the very bottom, maybe you can insulate yourself against this,
29:45
you know, this sort of cast system that tends to exist and where
29:49
doctors think of themselves as the sort of natural aristocrats, you know, the
29:56
royalty of the system. Yeah, I mean the cases health on the kindly
30:00
an institute one. I think the power of that point was made for me
30:06
when you noted in the book sort of the the most prestigious thing was to
30:11
be on the committee to determine the no Bell, not even to get the
30:14
Nobel And I think, you know it's you know, kids keep you awakened
30:18
nights, so my brain only works. So but I read that part a
30:19
second time and I said, okay, I mean that sort of to just
30:23
understand the power of institutions and the kind of culture in which the goal isn't
30:29
what you want, it's actually to be making those determinations. And the hierarchy
30:33
point is I mean, is I think really helpful. And I have smaller
30:37
cases of mind where students come after, you know, after being on rotation.
30:41
They always want to talk to the ethics person after that and says,
30:42
you know, and say something like, you know, I think I should
30:45
have spoken up here. I think I should have spoken up there. And
30:48
it's not full blown, you know, this is a whistleblowing. It's just
30:52
there are situations they run into. And that's part of why I was so
30:55
interested in reading the book. But the hierarchical nature of academic medicine as it's
31:00
practice at certain places makes sense. It makes sense of why it's tougher for
31:04
whistleblowers to blow the whistle in certain cases. And I want to shift a
31:10
bit from academic medicine though it's related to the field of bioethics, and so
31:14
I'll get in a bunch of trouble here, which will be fun. I'm
31:17
curious what you think about bioethics, and I know what You've written a bit
31:21
in different places, but there are some folks who have argued and there's a
31:26
nice book I like, we'll see which think John Evans are in a nice
31:29
book years ago sort of the history of future bioethics something like that. And
31:33
so it's oh, you know, the different task spaces usual sociology stuff,
31:37
and it says, but look, bioethicis doing bioethics does a nice job protecting
31:41
research subjects. And you have a very, very different view. And you
31:45
read the book right, the cases that you go through are I mean,
31:49
it's horrific. You know, you can't imagine, can't imagine yourself in some
31:52
of these situations, which I know is part of the power of the narrative
31:56
of the book. But what could bioeth do better? Is there another reading
32:01
of this? Is it complicated? I mean, what what's your take on
32:05
bioethics as which is an increasingly powerful It's not an increasingly powerful field, is
32:09
it really? I mean, is it? Is it powerful? I mean,
32:15
I'm I'm not impressed with the power of bioethics. So bio in your
32:20
view, it's not bioethics isn't powerful. Is that this because you make the
32:23
point well in the book that I'm being a little sloppy, But bioethics sort
32:27
of embeds itself within these broader academic medical institutions, and so it doesn't have
32:31
the there's no check or the sort of watchdog argument that Evans and some others
32:36
make just turns out not to be accurate or do you? I mean,
32:40
is that what does it works? Bio? I mean, say more about
32:43
why why doesn't have any power? Well? I mean it bioethics exists in
32:46
a number of different spaces. You know, I'm in a philosophy department.
32:52
Now, I teach bioethics to undergraduate and graduate students, not to medical students,
32:59
and you know, with a few exceptions, now not even to law
33:02
students or other professional students. Is that power? I don't know. I
33:07
wouldn't really consider you know, philosophers as having a tremendous amount of power.
33:14
I think bioethicists began to move into you know, what they thought were the
33:20
seats of medical power. It was probably before the nineteen nineties, but the
33:23
nineteen nineties seemed to be the time when a lot of these big changes happened.
33:29
And the argument was, if we're going to make any changes, we
33:32
need to be where the action is. So we need to be in medical
33:36
schools, we need to be working for pharmaceutical companies, we need to be
33:39
working for contract research organizations, we need to be advising biotech companies. And
33:45
that is where sort of the locus of bioethics seems to be now, I'm
33:50
not seeing a huge change for the better, you know, over the you
33:54
know, the past three decades. And I don't really see bioel thesis as
34:00
having a lot of power. You know, this this idea that you know
34:04
that bioethics, bioethicists are you know, a check on you know, the
34:09
power of physicians and researchers, that they are there to kind of put on
34:15
the brakes. I think that's largely a you know, a self serving delusion
34:19
that you know that bioethicists have to share in order to sleep at night and
34:23
you know, feel relevant. Look, I mean if you if you are
34:27
a bioethicist and an academic health center and all your colleagues are academic physicians,
34:35
nurses, other healthcare personnel, and the person who's deciding on your the people
34:40
who are deciding on your promotion and tenure are those very same people. And
34:46
you answer to a dean of medicine. And maybe you're a clinical ethicist and
34:52
don't even have the possibility of getting tenure. You're just a one, two,
34:55
three year contract. You can be fired at any time, and you're
34:59
encouraged to apply for grants from you know, the NIH and other medical granting
35:05
institutions which have their own standards, which are medical standards, and you're encouraged
35:10
to publish in medical journals or at least journals that include healthcare professionals as their
35:17
readers. To what extent is it even possible to imagine that you're somehow the
35:22
watchdog there, that you're an internal dissenter. It is true that this is
35:30
the story that bioethicists have to tell themselves, but you know, I don't
35:34
think there's much to it. It's a persuasive case, mean for individual bioethicists,
35:37
and I see the obstacles of the sort of many many reasons why it
35:42
would be challenging to serve as that check. Can you think of a single
35:46
case, I mean, I know, research scandals more than other sorts of
35:51
scandals. Can you think of a single case, and there are many out
35:54
there because academic health centers are in the news constantly because of some sort of
36:00
scandal, misconduct, sexual abuse, research abuse, corruption. Can you think
36:06
of a single case where the bioethicists who work there have gone on record speaking
36:10
out publicly against their own institution. Yeah, I mean that's because I can't
36:15
you know, I can't think of a single case, and you would think,
36:21
all right, wouldn't there at least be one, wouldn't you hope that
36:24
it would be always the case? And you know, I understand that bioethists
36:29
would say, oh, you know, I work on the inside. You
36:30
know, it's not a good look for me to, you know, go
36:34
to the press and criticize my own institution, and yeah, okay, well
36:38
maybe we'll just have to trust them on that. But you know, what
36:40
I will say is that none of the whistleblowers that I talked to in the
36:45
book saw bioethicis as their friend or ally. Either they gave them no thought
36:49
at all, or they thought of them as part of the enemy, as
36:52
siding with the administration. With the exception of Lee Turner. That's what happened
36:57
here at the University of Minnesota during the Marketson case, and in general,
37:00
that's what happens if you talk to people who have been through this. I
37:07
mean, talk to Nancy OLIVERI, who only makes a brief appearance in the
37:09
book, but very well known Canadian whistle blower when she spoke out about dangers
37:16
to her research subjects and a research study sponsored by appitects. Ask her what
37:23
she thinks of, you know, the center, the Joint Center for Bioethics
37:28
there, and whether she felt any support there whatsoever, and she will laugh
37:32
at you. This is one of those I'll chew on it and get back
37:36
to if you find any cases. But I anticipated the inside move because I
37:39
think that's the I think it's tough for bioethicists to defend themselves simply by saying,
37:45
well, think about all the cases that didn't get through, and I'm
37:47
interested for a number of different kinds of reasons about the field of bioethics and
37:52
given sort of the different perspectives and sort of how folks from a variety of
37:58
walks of life and practices. I mean, maybe it's becoming more streamlined now
38:00
with certain kinds of credentialing and certain advanced degrees in the field, But you
38:06
had folks from sort of different backgrounds coming together. So I think it was
38:09
this potential. But yeah, I mean it's a powerful case. We don't
38:14
have any examples big hip maybe to something more positive, But so is there
38:21
anything that or maybe not. Maybe there's just like one more demoralizing story,
38:23
But is there is there anything sort of putting the author hat back on.
38:30
Is there anything that you wish made it into the book that didn't, or
38:35
anything you were like, oh, if there was this story or this anecdote,
38:38
is this something that you know you thought, Oh, if I had
38:40
one hundred more pages or twenty more pages, or if I did it again,
38:44
what would be in there. My original plan was to include a chapter
38:46
on Nancy OLIVERI in her case in Canada, and I regret it because Nancy
38:57
is blunt and hilarious and brutal and probably one of the most quotable persons people
39:05
that I, you know, have ever talked to and I didn't, and
39:09
part of it was pandemic. But part of it is that Nancy's writing her
39:14
own book and she can tell her own story, you know, better than
39:17
I can tell her story. I mean, Nancy is a fantastic human being.
39:21
I mean, she she on. One of the things I really admire
39:24
about Nancy is how supportive she is for other whistleblowers. It's very easy after
39:32
I mean, the experience is so lonely, and it drives you inward,
39:36
and there is this there's a real tendency to be driven to a place where
39:40
you become so focused on yourself that you stop seeing the outside world in a
39:45
way, and you know, you're obsessed with your own problems. And somehow
39:51
that didn't happen to Nancy. I mean, she is just interested, engaged,
39:57
She's angry all the time, and very often, if you're a whistleblower,
40:00
that's what you want to hear as somebody who's just as mad about this
40:04
stuff as you are, but also just really interested in learning about other cases
40:09
and trying to figure this all out. That would have been that would have
40:13
been a good addition. But she's going to write her own book and I'm
40:15
pretty sure that it's going to be way better than mine. It's a good
40:19
plug, and we'll keep an eye out, and maybe she'd be willing to
40:22
hop on and chat about that book, or we could all sort of I
40:25
could pick everybody's brain. I'll get you on this one or maybe one more.
40:28
And if this is too personal, then tell me to go pound sand.
40:30
But are you out of the hole? Yeah, so maybe I should
40:34
explain what I mean. Oh sorry, yeah, yeah, yeah. The
40:37
whole is a kind of metaphor. I mean, you know, Kurt Vonnegut
40:40
has these has this lecture where he talks about the different plots of stories,
40:45
and one he talks about is the man in the whole story. Somebody gets
40:50
into trouble and gets out again, the story of Job, the story of
40:52
Dorothy and Oz, Dorothy defeats the wicked Witch, returns to canvas, to
40:57
Kansas, and that's a that's a man in the whole story. It ends
41:00
with It has a happy ending, has an encouraging sort of ending. And
41:06
I guess, you know, part of the point that I was trying to
41:08
make in the in the book is that you know, most whistleblower stories are
41:13
not really man and whole stories, because you know, very often the man
41:19
never gets out of the hole. And uh, I don't know. I
41:22
feel I feel better now in the in the psychological sense. I think I'm
41:30
like a lot of the people that I write about in the book, in
41:34
the sense of there's a kind of disillusionment that I don't think I'll ever really
41:39
recover from, and that sort of has changed the way that I see the
41:44
world. But the world doesn't look quite as dark to me as it did
41:49
the sort of worse points in that whole story. Not nearly as dark,
41:52
to be honest, And I should say, I credit the you know,
41:58
the people I talked to for a book for that. I mean, this
42:01
is one thing that I had hoped for the book, which is that by
42:07
putting a story side by side and having the people that I've written about see
42:12
their stories placed side by side, that there might be some kind of reassurance
42:17
in that, some sort of solidarity that, you know, even if they're
42:21
not hopeful stories, there's something reassuring about hearing the stories of people who've been
42:28
through the same thing that you have. I mean, it was definitely reassuring
42:30
to me to talk to people who had been through the same thing and to
42:36
be able to talk honestly and figure out what we shared and you know,
42:40
what we might have done better. And even if these whistleblowers never meet face
42:46
to face, maybe it'll be useful just to see them all together, their
42:52
stories all together. In the book The Community of the Alienated, as Walker
42:54
Percy puts it, a very final question in a line, because we're up
42:58
against the clock on it. I want to keep you too long. You've
43:01
already been so helpful and sort of thinking through some of these really tough situations
43:07
align for future physicians. You note early on that which I think is a
43:12
wonderful move. You went to philosophy. I mean, I'm just tell everybody
43:15
stop medical school, to finish medical school, then go to philosophy. But
43:20
and I think you say something about the move was to keep your soul for
43:24
you know, we need good physicians. Any recommendations for students in medical school
43:29
who want to be future physicians but have bumped into this uh challenging research ethics
43:34
issues. Read the book and say, oh geez, what am I getting
43:37
into? Any align, any line of help for or no? Which is
43:39
good too? Yeah, I don't you know? There are people who managed
43:44
to get through it all and hang on to their souls. I remember my
43:49
brother, my middle brother, Hal, who was a psychiatrist. He died
43:54
two years ago, but I remember he was behind He went to the same
43:59
medical school did and he was two years behind me. And I remember when
44:01
he graduated, when we were talking, he said, I wonder how long
44:06
it'll take for me to become a human being again. And you know,
44:09
the worry there was it might not ever happen. And it's I do think
44:15
it's very hard to recover. Some people manage to get through it better than
44:20
others do, and I don't really know how to be honest. A lot
44:25
of it may have to do with the places where you train in, the
44:30
specialty you pick, and people that you happen to have around you. I
44:34
guess the only thing that I could think about that I could suggest actually talk
44:40
about Walker Percy again, you know, is I felt like when I was
44:45
in medical school, I was becoming a terrible person. But at least I
44:50
realized that I was becoming a terrible person. And it seemed like there were
44:54
a lot of my classmates who were becoming terrible people and didn't understand it,
44:59
who couldn't see it, And there were a lot of people far above us
45:02
in the hierarchy who had fully blown, fully formed horrible people and had no
45:07
idea, you know about it. So if there's some way, you know,
45:13
to be able to step outside yourself and realize when you're when you're being
45:17
terrible to people, when you're being cool or unkind or jaded or insensitive,
45:22
and to at least have the decency to feel ashamed of yourself, maybe that'll
45:29
help, you know. I mean, Walker Percy said, you know,
45:32
uh, something like it's no, it's no great thing to be in a
45:37
predicament. But it's better to be in a predicament and realize that you're in
45:40
a predicament than being in one and not having any clue at all. Well,
45:46
I think that's a fitting line to wrap up the conversation. You know,
45:51
the practice of timeouts is so common in medicine now, you know,
45:53
we pause and make sure everything's both board. Maybe some sort of an ethical
45:58
timeout, professional timeout or something like that. This is sort of needed to
46:00
have that critical distance. I'm Brian Pilgton and I've been speaking with Carl Elliott,
46:06
author of The Occasional Human Sacrifice. Carl, thank you so much again
46:08
for being here. Everyone I think was interested in these kinds of topics research
46:14
ethics, academic medicine, bioethics, and especially for future physicians to sort of
46:20
just understand the history of the endeavor which is wonderful aims right the health of
46:23
persons, but which doesn't wrong a bunch of times. I mean, I
46:27
think it's a wonderful book for folks to read, even if challenging and harrowing
46:31
at the same time. This podcast series is a production of the Health Ethics
46:36
Lab, and I am grateful to colleagues in the Department of Medical Sciences,
46:39
the IHS Library, and the Hackensack Ready In the School of Medicine for making
46:44
this collaboration possible. To learn more about our work or to engage with the
46:47
series content, reach out to me Brian Pilkington at Brian dot Pilkington at hmh
46:53
N dot org. My