“The Occasional Human Sacrifice” by Carl Elliott – Book review

This is my review of the new book by Carl Elliott, “The Occasional Human Sacrifice“. It is about whistleblowers who exposed major scandals in medical research.

The author, Carl Elliott, is bioethics professor in department of philosophy at the University of Minnesota in USA. He is also a whistleblower himself, as he narrates in the introduction, having introduced us to the realities of medical education where strict hierarchies and casual patient abuse go hand in hand. Years before Elliot’s arrival at the University of Minnesota, a psychiatry patient committed suicide while being part of a deeply unethical clinical trial with antipsychotics, sponsored by Astra Zeneca and run by their paid consultant, the psychiatry professor Stephen Olson. Olson was protected and the victim’s mother was vilified by the university. You can read about that case in this 2022 article on Medpage. Elliott fought for justice for 7 years, and achieved only to become ostracised by his own colleagues and superiors. That experience is what drove him to meet other whistleblowers in historical medical abuse cases, and to write a book about them.

The book is dedicated to Elliot’s university colleague and fellow bioethicist Leigh Turner, who supported him ever since Elliott started fighting for justice against his own university.

I received the book for review from the publisher WW Norton after I contacted Elliot by email. We never met or spoke to each other before, not even by email, but he knows me and my work well. I contacted Elliott having learned about his new book on social media.

Elliot’s book is less about the details of the medical abuse and the institutional cover-ups, but about the persons and personalities of the whistleblowers. Much of the book is about the psychology of whistleblowing, Elliott often refers to scholarly literature trying to determine what kind of psychological character traits are required to make a person speak up where everyone else stays silent. It seems however, all theories fail and there are no such distinctive traits, as whistleblowers are all very different people. If anything, whistleblowers are often perceived by others as obsessive and antisocial troublemakers, vengeful losers or as outright traitors.

The book makes clear that whistleblowers can only lose. As good as always, the whistleblowers get ostracised, sacked, sued, or charged with misconduct themselves. Many lose their friends, some even lose their families. There are no rewards in whistleblowing. The perpetrators however are in most cases never punished, sometimes are even rewarded as a sign of support. The whistleblowers get forgotten, sometimes erased from history, the perpetrators fondly remembered.

The book has seven chapters, six of them are dedicated to six different medical scandals, and the people who blew the whistle on them. Elliott met these people, the narration focuses on them, their background, personal history and motivation in order to find out what makes a whistleblower. Who are these whistleblowers and why did they blow the whistle despite all odds staked against them, is what Elliot’s book is about. Is it the “honour code” which drives them? Elliott discusses this at length in Chapter 1, often using the examples of Richard Nixon whistleblowers, a political scandal which Elliott obsesses over since his youth till today.

Chapter 2 is about the Tuskegee syphilis study which became a paragon of American medical racism. There, Black men with a syphilis infections were specifically lied to about their condition an denied treatment, because the purpose of the study was to observe syphilis progression without any medical intervention. White doctors were intentionally watching their patients die slowly and painfully. The study began already in 1932, continued recruiting as penicillin was discovered but denied to the “participants”, and only stopped in 1975. The reason for the study’s termination was the public outcry following news reporting in 1972. This media coverage happened because an outsider, a Public Health Service employee named Peter Buxton blew the whistle, and never let go.

Chapter 3 is about the Willowbrook hepatitis study, where mentally disabled children were intentionally infected with hepatitis A and B under squalid and neglectful conditions of a huge psychiatric institution in USA, called the Willowbrook State School. The whistleblower here is Mike Wilkins, a young doctor and an activist who joined Willowbrook hoping to improve the conditions of children there and ending up first getting sacked and then blowing the whistle, by granting journalists access to the institution since he still had the keys (read here). A 1972 documentary “Willowbrook: the Last Great Disgrace” then exposed the abuse of children. The principal investigator who infected those children with hepatitis (having basically extorted uninformed consent from their parents), was the New York paediatrician Saul Krugman. Between 1955 and 1970, Krugman either injected children with the hepatitis virus or made them drink chocolate milk containing faeces from other infected children. His goal was to prove that his own hepatitis vaccine was working (read this 2020 Forbes article). Krugman died in 1995, before that he went on to collect offices, titles and awards, including making himself top ethics authority of this very Willowbrook case (Krugman, 1986).

Chapter 4 is about the Fred Hutchinson leukemia study, and its whistleblower John Pesando, who was a member of the ethics committee at the Fred Hutchinson Cancer Research Center. He was expected to nod and approve everything the principal investigator Donnall Thomas planed to do, yet Pesando protested instead, to all possible US authorities, in 2001 the story reached Seattle Times. Thomas was the Center’s clinical director and feared as dangerous bully, everyone else was scared of him and kept silent. Thomas was researching the graft-versus-host disease (GVHD), which happens where a bone marrow transplant causes a severe and potentially deadly immune response against the recipient’s body. In his “Protocol 126”, Thomas was treating donor bone marrow cells with antibodies to remove T-cells, expecting to make it safe for transplants. The antibody drug was provided by the company Genetic Systems, on whose payroll Thomas and his colleagues were. It didn’t work out, 84 out of 85 cancer patients treated under this protocol died. They all were lied to and denied standard therapy becasue an alpha male decided to do a human experiment without any previous animal tests. At the end, the whistleblower Pesando was hated by everyone, while an investigation against Thomas was abandoned, and the story ended with Thomas receiving… the Nobel Prize in Medicine in 1990. He died in 2012 a hero in USA and abroad, and even after his death he is still being celebrated.

Chapter 5 is about the Cincinnati radiation experiments, where from 1960 to 1971 at least 90 patients with advanced cancer were subjected to deadly whole-body irradiation at the University of Cincinnati Hospital. These cancer patients all miserably and painfully died, they naively agreed to be irradiated having been given false hopes by their eminent doctor. In reality, the study was sponsored by the Pentagon and it had only one purpose: to study how exactly massive whole body irradiation kills people, in order to prepare US soldiers for the future nuclear war. The principal investigator was the university’s radiologist Eugene Saenger. Once again, cancer patients were seen as expendable, you could do anything to them because they will eventually die anyway. The whistleblower here was Martha Stephens, who was not even a doctor or otherwise connected to medicine or medical ethics. She was a young assistant professor of English at the University of Cincinnati, and she blew the whistle on Saenger twice: first, in 1972 to get his monstrous human abuse to stop, and then again in 1993 to help the victims with the class-action lawsuit (which they lost). Saenger went on to collect offices, awards and titles before his death in 1990, and is currently a revered hero at his old radiology department of the University of Cincinnati. After lawsuits, the university agreed to put up a memorial to his victims, which is a literally a small plaque hidden in the backyard behind the bushes.

Chapter 6 is about the so-called “Unfortunate Experiment” in New Zealand. There, a gynaecologist named Herb Green at the National Women’s Hospital in Auckland decided that precancerous lesions called carcinoma-in-situ do not cause cervical cancer. To prove his clever theory, he decided from 1966 on to deny treatment to women with such diagnosed lesions, and just observe them. That was against the therapy guidelines valid at that time at his own hospital which mandated surgery. In Green’s experiment, there was not even a control arm of women who received the standard therapy of a surgery. The cervical surgery was very invasive and potentially damaging at that time, and Green viewed women’s role primarily as child-bearing machines. As the result, most women in his experiment developed cervical cancer, meany died. The key whistleblower was the hospital’s colposcopist Bill McIndoe, who was expected to collaborate with Green on that research project, but soon decided to blow the whistle. McIndoe died already in 1969, but Elliot spoke to his mentee Ronald Jones, who helped expose that scandal (see also this 2022 interview with Jones). McIndoe, Jones and a colleague exposed the disastrous study in their own scientific publication in 1984, which however had very little impact. The scandal only reached the public when the team (reluctantly) joined forces with feminist activists. Key difference to other cases is that Green was found eventually guilty and sanctioned by the National Commission of Inquiry in 1988. He died as a national shame in 2001.

The final Chapter 7 is about Paolo Macchiarini‘s plastic trachea transplants at the Karolinska Institutet in Stockholm, Sweden, the only recent medical scandal in the book. I won’t sum it up here, most of my readers may have read about it already. On this website in fact, from the very first article from February 2016 till my most recent coverage of recent jail sentencing as well as additional misconduct findings and retractions (read here). Those happened only thanks to the incessant work of the Liverpool professor and whistleblower Patricia Murray, who even served as witness-expert in the Macchiarini trial in Stockholm. Another whistleblower who immensely contributed to alerting the authorities was the patient rights advocate Elizabeth Woeckner from Philadelphia.

Elliot focusses on two out of three plastic trachea transplants Macchiarini performed at Karolinska: that of Andemariam Beyene (read here) and of Yesim Cetir (read here), they both met a horrible death. For his story, the author follows the four Karolinska whistleblowers: Karl-Henrik Grinnemo, Matthias Corbascio, Oscar Simonson and Thomas Fux, as well as the film-maker Bosse Lindquist who made the explosive Macchiarini documentary for Swedish television, called “Experimenten”. Very briefly mentioned is the early critic of Macchiarini’s method, the Belgian surgeon Pierre Delaere (read here).

You can probably imagine where I got disappointed.

As you know, I invested years of work investigating this trachea transplant affair, not just the transplants performed by Macchiarini and his acolyte Philipp Jungebluth, but also by Macchiarini’s former collaborators Martin Birchall in UK, Suchitra Sumitran-Holgersson in Sweden, as well as Heike & Thorsten Walles in Germany. I was sued several times by Walles and especially by Jungebluth and sentenced in German courts several times by judges who celebrated Macchiarini’s genius and refuted all results from Sweden as irrelevant. Once Macchiarini even submitted a written witness evidence against me, and it served as the basis for my sentencing. Now, I do not claim to be a whistleblower really, just an insane writer, but whether one likes it or not – fact is that For Better Science is the only exhaustive resource for all things connected to trachea transplants which used Macchiarini’s method. Including not just the list of all his known victims, but also a testimony from one of Macchiarini’s patient who refused and stood up to his threats.

My work is routinely used by scholars and journalists giving lectures, writing articles, peer-reviewed papers and books, or making TV documentaries about Macchiarini, mostly without any reference or acknowledgement at all (read about the crassest case here). I hoped at least for a brief mention in the reference section of Elliot’s book for those readers interested to know more about the Macchiarini affair. No such luck.

I wrote to Elliott, that I wish he had added just one reference to my site at the end, since I had a strong feeling he studied For Better Science when writing Chapter 7. I also said I especially wished for him to have mentioned the whistleblowers Liz Woeckner and Prof Patricia Murray.

Elliott eventually replied, said he had to leave out a lot of every story, explained that his book was “about whistleblowers — eg, institutional insiders who expose wrongs at their own institutions“, that he values Liz Woeckner very much, yet “activists, journalists, critics, dissenters, all are incredibly important, but different from whistleblowers, properly speaking.”

Patricia Murray is however a proper whistleblower even by that definition. Her own university provost Anthony Hollander is a former key collaborator of Macchiarini’s on that fateful first trachea transplant from 2008 which Elliott wrote about in his book. Professor Murray achieved to have the relevant Lancet paper by Macchiarini and Hollander retracted.

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“The Occasional Human Sacrifice” by Carl Elliott was published in 2024 by WW Norton

For Better Science articles on the topic of whistleblowing are here.

Disclaimer: As usual, I receive no payment or incentive to write this review, but I did receive the book gratis from the publisher

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