A new book on medical whistleblowers lauds their moral integrity but skips over the most glaring test of medical ethics in recent history.
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A new book on medical whistleblowers lauds their moral integrity but skips over the most glaring test of medical ethics in recent history.
The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No by Carl Elliott, W.W. Norton, 368 pages
If I told you that doctors had injected live cancer cells into elderly Jewish patients, including Holocaust survivors, without their consent for experimental purposes, you would be appalled. That was certainly the public’s reaction when the scandal at Brooklyn’s Jewish Chronic Disease Hospital was uncovered in 1964. But digging deeper into the facts reveals that the experiment was far more benign than it sounds. Quite a few medical “scandals” are like that.
The injections, believe it or not, were harmless. There was no chance of getting cancer from them. It had long been medically established that the foreign cancer cells from such an injection would be rejected painlessly by a patient’s body, with a lump forming and then healing over the course of weeks. The point of the experiment was to evaluate the sick patients’ immune responses, to see if it took longer than usual for these sick patients to reject the foreign cells. Oral consent was obtained from each individual. The word “cancer” was not used, but the patients were told, accurately, that “an injection of a cell suspension was planned as a skin test for immunity.”
Medical whistleblowers are the subject of a new book by medical ethics professor Carl Elliott, The Occasional Human Sacrifice. The impression left by the book is that most whistleblowers, far from being heroic, are troublemaking narcissists with their own private motives. In the case of the Jewish Chronic Disease Hospital, the whistleblowing doctor was known to have “a personal animus” against one of his colleagues whom he wanted to get fired. He also fabricated details, such as that patients were too senile to give consent or suffered intense pain from the experiment, allegations that other witnesses claimed were totally false.
Elliott got interested in medical whistleblowers when he became one in 2008. A mentally ill man named Dan Markingson committed suicide in St. Paul, MN, in 2003 while enrolled in a study of a new antipsychotic drug at the University of Minnesota, where Elliott teaches. The man’s mother, Mary Weiss, was overwhelmed with grief and took the story to the newspapers after trying unsuccessfully to sue the university. Elliott took up her cause, fixating on the fact that Markingson was in the throes of a psychotic episode in a locked psychiatric ward when he came to the researchers’ attention. (Where else would they have looked for subjects?)
Weiss says she discouraged her son from enrolling in the study, but, when he signed the consent forms, Markingson was out of the locked ward and a judge had ruled that he did not need involuntary commitment, so it was his decision to make. Weiss also claims she tried to persuade doctors to drop her son from the study after she grew concerned with his erratic behavior on the drug. With all compassion for Weiss, this is the sort of second-guessing that always torments bereaved survivors of suicides. Did I know at some level that something was wrong? Should I have done more? Perhaps her worries about the study loom larger in retrospect, for perfectly understandable psychological reasons. There is no way for Elliott, or the reader, to know.
Looking back, Elliott can hardly believe some of the things he did in pursuit of justice for Mary Weiss: “Did I actually build a black coffin for a group of students in white coats to carry into a meeting of the Board of Regents? Did I really imagine it would help the cause to tweet out a photograph of my 12-year-old daughter holding a guinea pig while wearing a rubber pig mask and a University of Minnesota lab coat with money spilling out of the pockets?” One friend tells him gently, “You should probably get some therapy.”
Elliott sought out other medical whistleblowers to see if, bluntly, they are all as crazy as he is. They are. Most of the whistleblowers he interviews were bumptious malcontents long before any medical scandal crossed their path. One is a great-nephew of Leon Trotsky who tells Elliott, “I really embrace the need for a socialist revolution.” Another co-founded a radical group of health-care workers in the 1970s called the Fanon Collective: “We were, like, with the Red Book, and Mao Tse Tung and Ho Chi Minh and Huey Newton and Malcolm X on big posters on the wall of our house. It was pretty easy to figure out where we stood.”
The first whistleblower Elliott meets is Peter Buxtun, the man who in 1972 exposed the Tuskegee syphilis experiment, which the U.S. Public Health Service had been conducting in Alabama since 1932. Buxtun, the son of a Jewish refugee from Czechoslovakia, had no medical background. He took a side job as a venereal disease tracker in San Francisco in the 1960s while enrolled as a graduate student in history. His job was to take lists of sexual contacts from VD patients, track down the names on the list, and persuade them to seek treatment. He heard about the Tuskegee experiment from one of his colleagues. He started collecting documents related to it and then passed those documents to a reporter.
It is amazing that new information remains to be discovered about Tuskegee after so many decades, but Elliott uncovers a shocking fact that, as far as I know, has never been disclosed before. The Tuskegee study involved approximately 600 black sharecroppers in Macon County, 400 with syphilis and 200 without. The men were offered free medical care in exchange for periodic examinations by government doctors. When the study began, there was no cure for syphilis. The few treatments available were painful, expensive, ineffective, and sometimes fatal. A 1930 experiment in the same county that offered free treatment to patients with syphilis had resulted in four deaths.
In the passage below, Buxtun is telling Elliott about his reaction when he received the envelope of records he requested from the Centers for Disease Control in 1965:
What Buxtun read about the Tuskegee study in that envelope contradicted everything that he’d been advising doctors to do with a syphilis patient. “You treat him. You don’t let him get back out in society and infect someone else,” Buxtun says.
The shocking fact is this: Buxtun apparently does not know that all the men in the Tuskegee study had been infected at least five years prior to the start of the study and thus, because their syphilis was in its latent stage, could not sexually transmit the disease to anyone else. There was no danger of the men infecting their partners.
Admittedly, Buxtun was not a doctor, and he was accustomed to dealing with syphilis patients in the initial, contagious stage of the infection. Nevertheless, it is staggering that the man whose personal crusade turned “Tuskegee” into a byword for medical malpractice is ignorant of such basic facts.
If someone does not understand how syphilis progresses through its primary, secondary, and tertiary stages, then he cannot possibly grasp what the Tuskegee study was trying to achieve. Syphilis is known as “the great imitator” because, in its latent stage, which can last for decades, its symptoms resemble many other diseases: weakened heart, degraded nervous system, blindness, liver tumors, or any combination of the above. The purpose of the Tuskegee study was to learn more about how syphilis manifests in this difficult-to-spot latent stage. Far from being “a long and inefficient study of how long it takes syphilis to kill someone,” as one TV reporter called it, the study was intended to improve the diagnosis of elusive cases.
Buxtun’s most serious accusation is that the Tuskegee experimenters withheld treatment from the men after the discovery of penicillin in the 1940s. According to the definitive study of Tuskegee, Bad Blood, by historian James H. Jones, Buxtun raised this question with the director of the U.S. Public Health Service, Dr. William Brown, in a letter in 1968. Brown “informed Buxtun that a committee of highly competent professionals drawn from outside the government had reviewed all aspects of the experiment and had decided against treating the men, a decision Dr. Brown insisted was ‘a matter of medical judgment since the benefits of such therapy must be offset against the risks to the individual.’”
Patients with weakened circulatory systems can suffer painful and even fatal complications when treated with penicillin. The blue-ribbon committee that Brown mentioned explicitly discussed whether the remaining Tuskegee patients should receive penicillin. It concluded that they should not, due to the “danger of late Herxheimer’s reaction which would worsen or possibly kill those syphilitic patients suffering from cardiovascular or neurological conditions.” The doctors also doubted that penicillin would cure the men at such an advanced stage of the disease.
Maybe Buxtun has a rebuttal to this argument. Jones, for instance, argues in Bad Blood that the decision of whether to offer treatment should have been made for each individual, weighing the risks and rewards on a case-by-case basis, and not for the Tuskegee subjects as a class. That’s a fair position. Buxtun never gets into such details. He simply repeats that the men were denied penicillin.
Elliott obsesses over the use of mild inducements to attract participants in medical studies. In the Tuskegee case, he fumes that participants were “lured” with free meals on examination days and an offer for the government to pay their funeral expenses. If the men would not have enrolled without the “suasion” of burial insurance, then they were illegitimately coerced, according to Elliott. In another case, exposed by one of his whistleblowers in the 1970s, parents were coerced into volunteering their disabled children for a hepatitis study by telling them that there were no spaces open at Willowbrook State School, a residential hospital for children in New York, but that beds were open in a different wing of the hospital for children enrolled in the hepatitis study.
Every time I read Elliott getting on his high horse about immoral inducements, I wanted to ask him one question: What did you think of the Covid vaccine mandates, Dr. Elliott? Defenders of vaccine mandates, such as the federal one that President Joe Biden announced in September 2021, always insisted that no one was being forced to undergo a medical procedure against their will. You are free to reject the vaccine, they avowed. You will just be subject to penalties, including the loss of your livelihood, if you refuse. The choice is up to you.
It is astonishing in retrospect that the discipline of bioethics was so completely absent from the debate over pandemic measures. These are the people who over decades have hemmed in researchers with reams of red tape and stringent procedures like Institutional Review Boards, which govern even humanities researchers who just want to conduct interviews or pass out surveys, both of which qualify as “human subjects research” according to IRB protocol. Yet during the pandemic, when medical interventions were forced on patients indiscriminately with no regard for individual autonomy or informed consent, bioethicists were nowhere to be found.
The pandemic was raging as Elliott researched and wrote his book. Unsurprisingly, almost every one of his whistleblowers is a Covid hawk. One has the two of them mask up for a walk outdoors. Another sits six feet away in deference to social distancing. Elliott tries to paint his whistleblowers as courageous loners who did the right thing even when no one else at their institution was willing to support them. How ironic, then, that when unjustifiable medical coercion was going on all around them, not just in one hospital or one lab but across the entire country, his brave truth-tellers were models of meek conformity.
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