Review of The Occasional Human Sacrifice

Carl Elliott, The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No.
W.W. Norton, 2024.
ISBN 978-1-324-11683-7, Paperback, 368 Pages, $19.99.

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For seven years, Carl Elliott waged a battle against his own institution, the University of Minnesota, over the death of Dan Markingson, an unwilling participant in a drug trial for the anti-psychotic drug Seroquel. Markingson’s mother had objected to the study and to the conditions of the study, and Markingson, who was confined to in-patient care at the University of Minnesota’s psychiatric hospital, was likely not able to provide proper consent for the trial. Markingson eventually killed himself with a razor blade in a bathtub at the psychiatric center. When his mother tried to sue the university, she was told that public institutions had immunity, and the university instead tried to hold her responsible for their legal fees.

Elliott learned about the Markingson case after a journalist friend at the St. Paul Pioneer Press sent him the multiple-part story. Elliott, who had been a professor of philosophy at the university for seven years, took it personally that he had known nothing of this case even though he was a bioethics instructor and on the institutional review board when the trials were going on. He then made it his mission to right this wrong by calling for an external investigation, only to be stonewalled and alienated by his colleagues.

Eventually a state investigation vindicated Elliott, but the victory, as is the case for most of the whistleblowers described in his book The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No (W. W. Norton & Company, 2024), was a costly one.

Elliott recounts his experience in the opening chapter of the book, but he does not paint himself as a helpless victim. Rather, he describes his efforts as “an all-consuming self-destructive, seven-year public crusade,” which he points out was over a mistreated research subject who was already dead (p. 4). His experience as a whistleblower sent Elliott down what he calls “the hole,” a phrase taken from Kurt Vonnegut’s “man-in-the-hole” idea for constructing a story arc.[1] “The hole,” as Elliott describes it, is a metaphorical place where whistleblowers end up when they blow the whistle, a place of isolation and solitude because no one believes you and you are left alone with your thoughts. Those thoughts often, although not always, turn into paranoias, obsessions, and resentments, while the thing the person is fighting against, the right they are trying to wrong, becomes all-consuming to the whistleblower.

Elliott is not proud of the person he became while he was “in the hole.” His actions were at times obnoxious and counterproductive, and Elliott describes his motives as mixed—as much about his sense of shame and personal vindication as the injustice done to Markingson and his mother. He wrote The Occasional Human Sacrifice “in an effort to climb out of the hole” (p. 31) by looking at other whistleblowers, their motivations, the stories they told themselves, and the repercussions of their actions. Elliott says that it is his hope that “by looking at these stories alongside each other, I could see patterns emerge that might help others undergoing similar struggles” (p. 31).

The Occasional Human Sacrifice catalogs some of the most egregious medical research abuses in recent American history, beginning in the 1950s with the Tuskegee Syphilis studies and concluding with Paolo Macchiarini at the Karolinska Institute, who was convicted in 2022 for fraud. While many of these cases are covered in bioethics classes, Elliott’s book differs from the typical textbook treatment because he interviews those who exposed the cases, the whistleblowers, and the journalists who reported on them. These people are often left out of the narrative about the cases.

The book starts with the Tuskegee Syphilis trials, one of the most infamous examples of a government-sponsored experimental trial, that lasted forty years and exploited poor black men who were not treated for syphilis even when treatment was available. Elliott talked to Peter Buxtun, now eighty years old, who worked at the health services department when the trials were going on. Buxtun was the one who gave Edith Lederer at the Associated Press information about the trials. Lederer gave the story to Jean Heller, whose article exposed the government-funded trials. As a result of the article, the Common Rule and the Office for Protection from Research Risks were established, as well as institutional review boards in universities.

The story of the Tuskegee syphilis studies is now a textbook case in bioethics courses. But Elliott’s thesis is not just to tell the story of how these cases were exposed but to analyze why someone went public about it while others did not. Buxtun, for example, had a Jewish Czech father and a Catholic Austrian mother. Buxtun, unlike Elliott and some of the other whistleblowers in the book, was not angry at those who opposed him. He just felt that the research was “Nazi medicine.” Notably, Buxtun did not experience the PTSD and mental torment that many whistleblowers experienced, but he also was not punished for being a whistleblower.

Buxtun’s experience contrasts with Mike Wilkins and Bill Bronston who worked at the Willowbrook State School. The Willowbrook studies involved using institutionalized children with diminished mental capacity to test the efficacy (and dosage) of gamma globulin for inoculating against hepatitis. The case involves problems with informed consent, intentional exposure of hepatitis by feeding the test group food with some amount of hepatitis-positive fecal matter, and experimentation on vulnerable populations. However, the bigger problem with the Willowbrook school was the conditions in which the children were living.

Wilkins, Bronston, and a few other doctors applied to work at the school because they were suspicious that there were abuses going on. The children at Willowbrook were living in squalid conditions that enabled hepatitis to spread. The justification for intentionally infecting the test group was that everyone at Willowbrook would get hepatitis at some point. It was Wilkins who called Geraldo Rivera, and this led to a documentary exposing the inhumane conditions of the residents. Several years after the experiments and the conditions at the school were exposed, Wilkins and Bronston still lived with the trauma of having worked at the Willowbrook State School. Wilkins developed a crack addiction and needed treatment for PTSD. Bronston fared better but says that he has perpetual melancholy.

While each of the whistleblowers that Elliott interviewed in the book have different stories, motivations, and personalities, all of them had a strong desire to do the right thing, if for no other reason than so they can live with themselves. Many of the whistleblowers Elliott interviewed specifically used the language of honor and shame. Elliott says that part of the injury of being a whistleblower is the loss of moral meaning in the world, so whistleblowers need a narrative to make sense of the injustice that they encountered, and they need to make sense of their actions as a “traitor” to their organizations.

Elliott does not write from a Christian perspective, yet he respects those with religious convictions. This book, I believe, is his way of contending with the problem of evil by analyzing what Hannah Arendt has called the “banality of evil.” Why do some people remain silent and others speak up? The modern-day version of “I was just doing my job” in the bureaucratic organization. Elliott specifically, referencing Moral Mazes, a 1988 book on how bureaucracy shields individuals from moral responsibility. In his conclusion he states, “The mystery of human evil is the mystery of human weakness” (p. 287), a sentiment he articulates as he toured the Richard Nixon Presidential Library and Museum.

Overall, The Occasional Human Sacrifice is good book for surveying instances of egregious human research abuses and the personal toll people have paid to bring those cases to light. The book delves into power structures and the cost of holding powerful people accountable, and it addresses the psychology of the whistleblower, which Elliott describes in the introduction:

Whistleblowers in search of a hopeful ending must often find a way of putting a morally positive spin on an act of betrayal whose consequences have been outwardly disastrous. They need to tell a story of heroic sacrifice in service of a just cause, or of a righteous struggle against an unforgiving world, or the higher rewards of remaining true to your principles. Otherwise, their story risks looking like that of Judas as told in the Gospel of Matthew (pp. 27–28).

This seems to be what this book is about, making sense of what he and others have gone through, and continue to go through, as they wrestle with the aftermath of doing something heroic or traitorous, depending on who is writing the story.

I struggled to understand Elliott’s faith in institutions and why he sees Judas in a sympathetic light, namely as a whistleblower. Judas took money for turning Jesus in to the authorities. The whistleblowers in this book did not stand to gain anything for themselves other than possibly a clear conscience, but even that proved elusive. I do not think their stories risk looking like Judas as told in the Gospel of Matthew because Judas betrayed a righteous person and the whistleblowers betrayed an institution comprised of sinful people. Judas instigated sending an innocent man to death, while the whistleblowers in this book were trying to prevent innocent people from harm. If the whistleblower reminds me of any biblical character, it would probably be Joseph more than Judas.

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References

[1] “Kurt Vonnegut on the Shapes of Stories,” posted October 30, 2010, by David Comberg, YouTube, 4:36, https://youtu.be/oP3c1h8v2ZQ?si=sUVEK5-XYa7m-r5U.