Commendable Snitches

Gordon Marino considers “The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No” by Carl Elliott.

By Gordon MarinoAugust 1, 2024

• Philosophy & Religion

• Science & Technology

CARL ELLIOTT HAS a medical degree but has never practiced. In his masterfully written new book, The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No, he details the stories of whistleblowers who sounded the alarm on a selection of medical research projects causing terrible harm to, and frequently the deaths of, uninformed subjects. Throughout, Elliott presses two questions: What do these moral snitches have in common? And what prompts these turncoats, at great cost to themselves, to expose the underbelly of clinical research?

The author knows both the inner and outer terrain of the isolated world occupied by those who speak truth to medical power. Over a seven-year period, Elliott and some allies tirelessly tried to bring his employer, the University of Minnesota, to task for the suicide of Dan Markingson, a subject in a Big Pharma–financed study testing the effects of the antipsychotic drug Seroquel. In his mid-twenties, Markingson was in the midst of a full-blown psychotic episode when he signed on as a subject. Over time, Markingson’s mother, Mary Weiss, recognized that her son was getting progressively worse. She tried to extract him from the study, but to no avail. In 2004, the recent college graduate took his life, slitting his throat with a box cutter. His farewell was a note reading: “I left this experience smiling!” Thanks in part to Elliott, the Markingson case received a modicum of fleeting national attention. In the process, Elliott learned firsthand of the fury, isolation, and psychic wounds that arise when one tries to call attention to evils that come from on high.

Though it provides analyses of other tales of woe, the book is anchored in six case studies, the first being the infamous “Tuskegee Study of Untreated Syphilis in the Negro Male.” The so-called “study,” initiated in 1932, examined the progression of syphilis in 399 uninformed African American men; the researchers left them not only without medical treatment for the disease but also with the freedom to unknowingly infect others. By 1943, syphilis could easily be cured with penicillin, but still the unwitting subjects remained untreated. Their compensation consisted of free meals and guaranteed coverage of burial expenses, a promise that most of the men would be forced to cash in on.

In 1965, Peter Buxtun, a public health employee working in San Francisco, got word of the Josef Mengele–type experiments in Alabama and sounded the alarm. After a prolonged battle, Buxtun and a small posse of journalists succeeded in revealing this medically garbed act of racism. The subsequent Congressional hearings and legislation aimed at providing moral guidewires for human experimentation, which resulted in the formation of various ethics committees, including institutional review boards (IRBs). Because of their lack of outside review or power of enforcement, Elliott shrugs off most of these reforms and others that followed as window dressing.

For exhibit two of the not-so-occasional human sacrifice, Dr. Paolo Macchiarini became famous in 2008 for accomplishing the first synthetic trachea transplant. At first, the Swiss-born surgeon was heralded à la Christiaan Barnard and recruited by the famous Karolinska Institute in Sweden. However, with follow-up, it became clear that the patients who underwent the procedure suffered excruciating deaths within months. Unfazed, the rock-star doctor came up with the wild idea of creating and implanting artificial tracheae bathed in patients’ stem cells. Initially, it seemed as though this surgery produced miraculous outcomes, but within weeks, the results turned out to be just as ghastly and fatal as the attempts at initial transplants.

With swagger worthy of Mick Jagger, Macchiarini was able to retain his fame and deflect the onslaught of critique for years. But a squad of four whistleblowers worked tirelessly to remove the scalpel from the lab-coated egomaniac. Because of Macchiarini’s stardom and the renown of the Karolinska Institute, the researchers who knew about the tragic fate of Macchiarini’s patients remained mum and acted as if the small cadre of informants in the department were radioactive. Eventually, an investigation led to Macchiarini’s trial, where he was found guilty of “gross assault” and sentenced to 2.5 years in prison. The verdict is under appeal. As Elliott notes, the doctor has yet to spend a day in jail.

As for commonalities between these snitches in white hats, Elliott hesitates. Personality-wise, the only common thread he could discern in the whistleblowers is described in the now passé terms of a sense of “honor.” Elliott concludes:

When I listen to their stories, I hear the language of honor. I’m not entirely sure that they all hear it themselves […] but most of the fundamental elements of honor are there: courageous resistance, the sense of duty to oneself, the principled code of conduct, and the need not just to do the right thing but to be recognized for it by the people one respects.

To use another term that has nearly been “canceled,” these good folks had a sense of shame, and, as such, would have been ashamed to know and remain silent about the sometimes sadistic practices of the medical community.

Ironically, Elliott appears reluctant to prescribe following the lead of whistleblowers. In the closing pages, he not only reiterates the scars of individuals of goodwill urgently trying to call attention to harms done by researchers in the healing profession, but he also reminds the reader that the changes a traitor to the medical hierarchy might hope for are rarely realized. If some good does come of the process, it is usually because the misdeeds are recognized as related to a larger movement—e.g., the Tuskegee Study and the Civil Rights Movement. Yet, if Elliott is right, healthcare workers and researchers with a sense of honor will not be dissuaded by the pangs of trying to create transparency.

Ultimately, Elliott’s pessimism about clinical experiments seems to stem from a sense that the medical establishment, like other hierarchical institutions, has enormous power over people partly because of patients’ unwavering trust in their goodwill. Then again, what keeps those on the wards and in the labs from singing out against Nazi-like medical practices is the carking need to be liked and the terror of losing their fingerhold on a job or on power. If the reader will forgive a political aside, consider the recent about-face of American senators and congresspeople who originally and vociferously condemned the January 6 insurrection.

If whistleblowing had positive resonances, I would blow the whistle that this book is a must-read for the throngs of students obsessed with someday wearing a stethoscope around their necks. But to that very group, Elliott offers this cautionary cadenza:

A central aim of medical training is to change your sensibility, to transform you into a different person, one who doesn’t react to death and illness like a civilian anymore. The danger is not just that you will see other people do horrible things and feel too afraid to speak up, but that you will no longer see what they are doing as horrible.

¤

Featured image: Birger Carlstedt, Surrealistiskt Landskap, 1945, is licensed under CC BY-SA 4.0 by Amos Rex.