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The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No

par Carl Elliott

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The Occasional Human Sacrifice is an intellectual inquiry into the moral struggle that whistleblowers face, and why it is not the kind of struggle that most people imagine. Carl Elliott is a bioethicist at the University of Minnesota who was trained in medicine as well as philosophy. For many years he fought for an external inquiry into a psychiatric research study at his own university in which an especially vulnerable patient lost his life. Elliott's efforts alienated friends and colleagues. The university stonewalled him and denied wrongdoing until a state investigation finally vindicated his claims. His experience frames the six stories in this book of medical research in which patients were deceived into participating in experimental programs they did not understand, many of which had astonishing and well-concealed mortality rates. Beginning with the public health worker who exposed the Tuskegee Syphilis Study and ending with the four physicians who in 2016 blew the whistle on lethal synthetic trachea transplants at the Karolinska Institute, Elliott tells the extraordinary stories of insiders who spoke out against such abuses, and often paid a terrible price for doing the right thing.… (plus d'informations)
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In novels and movies, the shape of the whistleblower narrative often resembles what Kurt Vonnegut called a ‘man-in-a-hole’ story. In these stories, someone gets into trouble and gets out again. Vonnegut used to plot the shape of the man-in-a hole story on a graph: a straight line takes a deep dip and then returns to baseline . . . [People] . . . love the story because of its reassuring message. Job survives his ordeals and is rewarded by God for his faithfulness. Dorothy defeats the wicked witch and finds her way back to Kansas. The whistleblower exposes the truth and brings down the corrupt organization. The man gets out of the hole.

Missing are the lingering effects of being trapped in a hole. In the hole you turn inward. The world outside the hole fades away. Alone with your thoughts, you think of nothing but yourself and how to get out of the hole.


Carl Elliott is a professor of philosophy at the University of Minnesota. He specializes in bioethics, the philosophy of medicine, the medical humanities, Wittgenstein, and moral philosophy. Although he’s been an academic for many years now, that wasn’t the original plan. He’d initially pursued a career in medicine, graduating with an MD in 1987. It didn’t take him long to discover that he didn’t like the person he was becoming as a physician, and he changed course.

Early in this honest, personal, rich and compelling work about whistleblowers who expose medical wrongdoing, the author observes that “Anyone reading a book about an ethical issue must decide whether they trust the narrator.” I implicitly trusted Elliott. Having trained in medicine and worked in the area of bioethics, he’s knowledgeable about how physician scientists and medical researchers proceed and he’s well informed about the pharmaceutical industry’s “perverse influence on medical research.” He himself is a medical whistleblower—about a tragic case at his university’s medical center. He’s articulate, insightful, introspective, and admirably honest about his own failings.

In 2003, Dan Markingson, a young man on a locked psych ward at Fairview, the University of Minnesota’s teaching hospital, was enrolled in a drug study of Astra Zeneca’s Seroquel. The research was being run by Markingson’s treating psychiatrist, Stephen Olson. While in the grip of full-blown psychosis—vulnerable, confused, and delusional—Markingson had been admitted to Fairview. Against the wishes of his mother, Mary Weiss, he was pressed to sign a consent form for participation in Olson’s research. Over the next several months, Weiss saw her son deteriorate dramatically while on the antipsychotic.* She attempted to have him removed from the study multiple times, and she was repeatedly dismissed. Ultimately, the young man used a box cutter to slash his throat while lying in a bathtub.

After his suicide, Weiss filed an unsuccessful lawsuit against the university—a judge had ruled that as a state university the institution had statutory immunity against this type of suit. The emboldened university struck back at Weiss, demanding that she pay $56,000 to defray its legal expenses. Elliott was appalled by his employer’s demand, regarding the action as petty cruelty. In the years that followed, he dug into the case, accessing and examining medical records, depositions, expert testimony, unsealed memos, and university records. He now acknowledges that he naively hoped that by exposing the details of the Markingson case, public pressure would mount in support of an external investigation and that the university would be moved to make amends. Thwarted in his efforts nearly every step of the way by an unyielding institution, perceived as a self-righteous fanatic, and abandoned by colleagues and friends at the university, Elliott became acutely aware of the impacts of whistleblowing on one’s mental health. This book, a consideration of the experiences and psychology of a number of medical whistleblowers and the shockingly unethical research they exposed, was clearly born of his personal ordeal. Writing An Occasional Human Sacrifice, Elliott says, constitutes his attempt to pull himself out of the hole.

While whistleblowers’ motivations and experiences are not uniform, the author’s research (which includes many interviews with those who’ve exposed wrongdoing) does point to certain commonalities. Elliott notes that those who do speak up are possessed of a powerful moral compulsion to act. The explanations they provide for doing so in the face of significant risk are not founded on complex internal arguments about right and wrong but on staying true to an inner voice. The determination to remain honourable people and their shame at being complicit in wrongdoing are also important factors. Whistleblowers are often idealistic: they feel revulsion at what they see and cannot understand others’ willingness to tolerate corruption and cruelty. Hardened cynics, on the other hand, are certain the system is rigged and feel no inclination to sacrifice themselves. And whistleblowers do make sacrifices. Regarded as traitors, they’re usually defamed and ostracized. Many lose everything: career, family, friends, and financial stability.

Elliott’s characterization of whistleblowers is not without nuance. He points out that there’s a gray zone between those who act honourably to expose injustice and malicious, aggrieved others who simply want to retaliate. When it comes to whistleblowing, revenge “is rarely irrelevant.” As a case in point, he discusses the experience of Canadian hematologist-researcher Nancy Olivieri, who disclosed her concerns to patients being treated with a drug for thalassemia, a blood disorder involving abnormal hemoglobin. Olivieri also defied the pharmaceutical company (Apotex) that produced it by publishing the alarming study results. In short order, she was fired from her administrative role at the University of Toronto, which at the time happened to be negotiating a major donation from Apotex. Olivieri acknowledges that she was fuelled by rage that her attackers could get away with it: “revenge and accountability were strong motivators.” In her case, after a fight of many years, a comprehensive settlement with the university was reached. This is not usually the case. The corrupt regularly walk free.

Elliott covers a number of historical and more recent medical whistleblowing cases, among them:
-the infamous 40-year Tuskegee Syphilis Scandal (in which poor Black men were left untreated for a syphilis, even when penicillin was a known remedy—basically so that autopsies could be conducted on them)
-1970s research using institutionalized “mentally defective” children who were deliberately infected with the hepatitis virus;
-the abuse of patients at a major cancer research center in Seattle;
-total body irradiation experiments that caused the premature deaths of mainly poor, Black patients—not intended to improve their odds of survival but to determine for the Pentagon how much radiation an American soldier might be able to endure.

There is much more, each case raising slightly different issues, each whistleblower experience offering up a variation on the themes of the evil that lies in human weakness, bystanders’ resistance to rocking the boat even when others are suffering, and people’s tendency to defer to authority and hierarchy. Elliott also includes discussions of (the inadequate) oversight of medical research and the legal protections available to some whistleblowers. He cites numerous sources on these subjects and alludes to works of literary fiction to illustrate other points throughout the book.

Whether intended or not, Elliott’s material demonstrates that the spirit of the Nazi doctors lives on. He observes that physicians have an extraordinary amount of power over people, many of whom are very vulnerable due to illness or disability. It is a fact that academic medical researchers are typically protected by their institutions while whistleblowers are punished. It is also true that victims are seldom compensated or even apologized to for harms suffered. Then there are those who simply stand watching on the sidelines. Fully aware that something is wrong, they’re insufficiently troubled to do anything about it, knowing that employers prefer the loyal employee over the honest one.

Elliott’s is a stunning and infuriating book. It’s lucid, accessible ,and urgent. I’ve barely scratched the surface here. The Occasional Human Sacrifice deserves to be widely read and discussed. I thank the author for writing it, and I hope that in doing so he has managed to climb free of the dark hole that an act of conscience and the pursuit of justice left him in.

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*Astra Zeneca was sued in 2009 by patients who were prescribed Seroquel. Unsealed documents from that case revealed that the company had been manipulating research studies to make the antipsychotic appear safer and more effective than it was. Some of those studies involved Charles Schulz, chair of psychiatry at the University of Minnesota. ( )
  fountainoverflows | May 9, 2024 |
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The Occasional Human Sacrifice is an intellectual inquiry into the moral struggle that whistleblowers face, and why it is not the kind of struggle that most people imagine. Carl Elliott is a bioethicist at the University of Minnesota who was trained in medicine as well as philosophy. For many years he fought for an external inquiry into a psychiatric research study at his own university in which an especially vulnerable patient lost his life. Elliott's efforts alienated friends and colleagues. The university stonewalled him and denied wrongdoing until a state investigation finally vindicated his claims. His experience frames the six stories in this book of medical research in which patients were deceived into participating in experimental programs they did not understand, many of which had astonishing and well-concealed mortality rates. Beginning with the public health worker who exposed the Tuskegee Syphilis Study and ending with the four physicians who in 2016 blew the whistle on lethal synthetic trachea transplants at the Karolinska Institute, Elliott tells the extraordinary stories of insiders who spoke out against such abuses, and often paid a terrible price for doing the right thing.

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