The BMJ has already posted my positive review of this book on whistleblowing, https://www.bmj.com/content/385/bmj.q1147 but there may be some people who will be reached via my blog that are not reached by the BMJ. The book is well worth reading even if you have little interest in either whistleblowing or medical research-because it’s full of stories well told. If you prefer your information in the form of a video, you can watch this: https://cfe.torontomu.ca/events/why-does-medicine-shoot-messenger-when-things-go-wrong
Why do people become whistleblowers? Why do most people not become whistleblowers? What becomes of whistleblowers? These are three of the questions that that Carl Elliott, a professor bioethics at the University of Minnesota, sets out to answer in the context of medical research in his beautifully written book The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No. (I suspect that the publisher rather than Elliott chose the title.)
Elliott was inspired to try and answer these questions by his experience as a whistleblower against his own university. In June 2008 he read a newspaper account of the suicide of Dan Markingson, who had in May 2003 tried to decapitate himself in a bathtub. Markingson had been a participant in a clinical trial of an antipsychotic drug, Seroquel, funded by Astra Zeneca. He had been experiencing full blown psychosis when admitted to the trial, raising questions about informed consent. His mother had not wanted him entered into the trial, but he was under a civil commitment order that meant he had to obey the psychiatrist who entered him into trial. There were also conflicts of interest and financial pressure to get patients into the study.
Markingson’s mother filed a lawsuit against the university, but astonishingly the university, a state institution, had statutory immunity against this type of suit. Instead, the university took action for costs against Markingson’s mother, leaving her with a bill for $56 000.
Elliott had friends in the department of psychiatry and had served for years on the Institutional Review Board that approved the study. He knew as well that the department had a troubled history that included the head of child psychiatry going to prison for research fraud. Elliott began to ask questions of the university but was shrugged off. He met Markingson’s mother. He never took a clear decision to become a whistleblower but “a few halting steps” turned him into one. In early 2009 it emerged from a court case that the trial that led to Markingson’s death may have been fraudulent. Elliott wrote a piece about the trial and Markingson’s death for Mother Jones, but it had no impact. Elliott came to be seen as a betrayer of his employer and a “moralistic, self-righteous fanatic.”
Life became despairing and miserable for Elliott as he suffered from “the occupational hazard of whistleblowing…an inability to stop ruminating over the past, mentally rehearsing every battle and betrayal in order to convince yourself that you acted honorably.” Life began to improve in 2013 when he met a former governor of Minnesota who took up the case. In 2015 an external review by the university found major flaws and weaknesses in the university’s research oversight program and a “culture of fear” in the department of psychiatry. Weeks later a government body delivered a “stunning rebuke” to the university. But, writes Elliott, “there were no apologies, no mea culpas…No physician at the university expressed sympathy or solidarity, even in private. If anything, public vindication simply meant most people in the academic health centre despise us even more.”
Writing the book has been part of Elliott’s recovery programme, and he has set about exploring whistleblowing not by reading studies of the subject (although he does refer to them) but by travelling across America and to New Zealand and Sweden to meet those who blew the whistle on six of the leading examples of disgraceful behaviour by medical researchers. The result is a book that is of great interest to people like me fascinated by research misconduct but could also be read as a collection of rich and startling short stories by people with no particular interest in medical research.
The stories will be familiar to those interested in research misconduct will be well known, but Elliott is interested in the whistleblowers, most of whom remain unknown, unsung, and often unhappy. Elliott brings the whistleblowers to life with the skill of a novelist.
Peter Buxtun, “a lifelong Republican [and] member of the National Rifle Association,” blew the whistle on the famous Tuskegee Study, where in 1932 the US Public Health Service began a study in Alabama of following a nearly 400 black men with syphilis without seeking consent or offering treatment. Buxtun, who was nearly 80 when Elliott met him, worked for the Public Health Service in San Francisco not Alabama. He discovered the study in 1965 after overhearing a coworker talking about it and asked for reports on the study. He was sent a pile. There was nothing secret about the study. Its intention was clear in the title of a paper published in JAMA in 1936 “Untreated syphilis in the Male Negro: A Comparative Study of Treated and Untreated Cases.”
Buxtun prepared a report in which he compared the Tuskagee study to the experiments the Nazis had done. In 1967 he was summoned to the headquarters of the Communicable Disease Centre in Atlanta and given a “tongue lashing” by senior officials in front of the American flag and the flag of the Public Health Service. The men in the study, the officials insisted, were “volunteers,” although promised free meals and burial in exchange for agreeing to a post-mortem.
In 1966 Henry Beecher published in the New England Journal of Medicine an account of 22 post-war studies, all of them published, in which the health and lives of subjects had been put at risk without them being informed of the risks. The following year a British doctor, Maurice Pappworth, published Human Guinea Pigs, which described even more abusive experiments, including studies on children and mentally incompetent adults. It was, wrote Pappworth, the “maniacal impulse” among academic physicians to publish research papers that led researchers to conduct such studies. The investigations of Beecher and Pappworth led to institutional review boards in North America and ethics committees in the UK.
Others apart from Buxtun had objected to the Tuskagee study, but he alone had the moral clarity and persistence to pursue the case. He tried journalists, but they weren’t interested—until in 1972 he met one who was. She passed on the story to a more experienced journalist who wrote a story that appeared in the New York Times in July 1975 with the title “Syphilis Victims in US Study Went Untreated for 40 Years.” That article blew the whole scandal open, but none of the physicians responsible for the study were sanctioned. Indeed, many were honoured. This pattern of nobody being punished and the perpetrators being feted (in one of the cases winning the Nobel prize) occurs in other cases that Elliott describes.
What is unusual in the Tuskagee case is that Buxtun was never punished and does not seem to have been damaged by his experience of whistleblowing. He holds no rancour and has moved on. “ A lot of good things have happened,” he tells Elliott, although he still resents the official who gave him a tongue lashing and in one experiment dripped gonorrhoeal pus into the eyes, urethra, and rectum of a dying, mentally ill woman: “I can see Dr Mengele saluting this guy.”
“Like medicine, law, and hard-boiled detective fiction,” writes Elliott, “bioethics is built on cases…these cases are equal parts thought experiment, cautionary tale, and New Testament parable.” In the Willowbrook case researchers deliberately infected severely handicapped children with hepatitis A and B. Something similar happened in Britain. At a cancer research centre in Seattle researchers treated patients with leukaemia and lymphoma without consent with bone marrow transplantation: most of the patients died and yet could have survived with conventional treatment. In Cincinnati researchers gave patients with cancer, most of them poor and black, lethal doses of radiation in a study funded by the Pentagon, which wanted to know what would happen to soldiers exposed to high levels of radiation. In Auckland, New Zealand, an academic obstetrician and gynaecologist tested his conviction that cervical smears were “the biggest hoax ever perpetrated on women” by leaving women with positive smears to see what happened to them. Many died. The most recent case where Elliott met the whistleblowers was the case where the charismatic transplant surgeon Paolo Macchiarini enthralled the leadership of the Karolinska Institute (which awards the Nobel Prize in Medicine) with his implantations of synthetic tracheas. The science was bogus, the patients died, the Karolinska leadership was replaced, and Macchiarini is in prison. The Lancet retracted two of his studies in October 2023. The whistleblowers in this case recognised their vulnerability and worked together as a team of four, although they too have suffered.
Over the years I’ve been rung by potential whistleblowers, and I say to them two uncomfortable things: you have a duty to act but you are likely to be badly damaged as a result. What I haven’t said to them but will now after reading Elliott’s book is that the damage you experience is likely to affect your whole life. It’s a matter of power: “doctors have it and their subjects don’t.” Elliott quotes John Pesando, a whistleblower in the Cincinnati case, who says “Every whistleblower is an amateur playing against professionals.” Pesando believes that bureaucratic mechanisms like consent forms and research guidelines are ruses hiding the real issue, power. “Until the issue [of medical experimentation] is joined on the basis of power, rather than over smokescreens like ethical codes, exploitation will continue.”
Most of us don’t blow the whistle because we recognise where the power lies. The state, the university, our employer, or the professor will crush us. But some people do blow the whistle. What drives them? Elliott concludes that there is no whistleblower ‘type’ but that they usually act for deeply-held moral reasons. He invokes the somewhat old fashioned idea of “honour” as the best way to explain why they act. We think of duels, the Mafia, and Don Quixote tilting at windmills, but honour is about “duty to one self.” Whistleblowers want to be able to live with themselves, to be able to look themselves in the mirror, to feel proud in front of their children. An alternative explanation offered by political scientist Fred Alford is “narcissism moralised.” Perhaps that’s close to honour. When I think of whistleblowers I know I think of people with a much greater sense of right and wrong than most of us have. I could use words like “exaggerated” or even “pathological,” but I like the concept of honour. I certainly admire whistleblowers.
Elliott doesn’t end with answers to the questions of why people become whistleblowers, why most people do not, and what becomes of whistleblowers, but that’s the beauty not the failure of his book. He may not have provided the neat answers that might arise form a survey of 150 whistleblowers, but he has provided much richer, more complex, and more convincing answers than arise from such surveys. He has given us a readable novel rather than answers to a questionnaire.
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