Book Review: Truth and Consequences for Medical Whistleblowers

By Elizabeth Svoboda is the author of “What Makes a Hero?: The Surprising Science of Selflessness.” Originally published at Undark.

Carl Elliott, in his own estimation, is a gutless wonder. When the University of Minnesota bioethicist was a medical student, he was ordered to do a bone marrow biopsy. Afraid to ask for help, he faked his way through a procedure he’d never tried, leaving his patient moaning in agony. And when he saw a resident dose a benzo-groggy patient with IV naloxone, a useless and possibly harmful bid to wake him, Elliott kept his mouth shut. “Did I know this was wrong? Yes,” Elliott writes. “Did I object? No, I did not.”

It’s a contrarian way to launch a book-length study of whistleblowers, a group to which Elliott himself belongs. But the self-effacing tone also feels apropos. A core theme of “The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No” — equal parts investigative report, history, and memoir — is that those who expose medical wrongdoing are hardly heroes, at least not in the redemptive Hollywood sense. Unlike Bennet Omalu or Erin Brockovich, who grew famous by spotlighting corruption and ushering in change and whose stories eventually made it to the big screen, most scientific whistleblowers remain under the radar, their efforts seldom yielding justice for victims. By speaking up, they may sacrifice their own career prospects, coming away with little more than a dismal question: Was the whole thing really worth it?

Like journalist Tom Mueller’s “Crisis of Conscience: Whistleblowing in an Age of Fraud,” which features case studies on whistleblowing more broadly, Elliott’s book unfolds as a series of character profiles. He interviews an ace lineup of objectors, from Peter Buxtun, who exposed the U.S. government’s Tuskegee syphilis study in which Black men with the disease went untreated, to John Pesando, who raised alarms about a bone marrow transplant protocol that killed cancer patients. Elliott dissects his subjects’ moral anatomy with nuance and delicacy, describing the inner retrenchment that happens when whistleblowers, frustrated at going unheard by those in power, grow ever more cynical and aggrieved. Of Buxtun, Elliott observes, “He has the air of a man who fears the world is populated by blockheads and scoundrels.”

Tragically, that defensive posture may turn even more people away, especially those who question the crusader’s underlying motives. “From the outside,” Elliott writes, “it is hard to know if a would-be whistleblower is an honest dissenter or a deranged conspiracy theorist.”

Elliott’s own membership in the disaffected whistleblower club is what lends such statements their heft. More than 15 years ago, he read a story in the St. Paul Pioneer Press about unethical tactics his fellow Minnesota faculty member Stephen Olson was using to recruit and retain subjects in a study of the antipsychotic drug Seroquel. One participant — 26-year-old Dan Markingson, who’d signed the consent form while psychotic — died by suicide after several months on Seroquel. Though Markingson’s mental state had deteriorated since he’d started the drug, his mother Mary Weiss’s pleas to release him from the study went ignored.

Aghast at Markingson’s fate and concerned about other subjects, Elliott took action. He wrote a muckraking article on the Seroquel study for Mother Jones magazine. He filed complaints with the university and cast around for ways to trigger an external review of the study.

But like his whistleblower interviewees, Elliott was often ignored and demeaned. He saw firsthand what happens when a moral motive collides with a socially expedient one: the safeguarding of institutional prowess. When Elliott cited the compromised Seroquel study in a university talk, “the question-and-answer session felt like what sociologists call a ‘degradation ceremony,’” he writes, as Minnesota faculty acted outraged that he’d brought the case up. “I remember fighting an intense desire to go back to my office, crawl under my desk, and open a bottle of Jack Daniels. It was 9 a.m.”

A grimmer fate befell Mary Weiss, who filed a lawsuit alleging the University of Minnesota’s negligence in the Seroquel study after her son died. Weiss’s lawsuit foundered when a judge declared the university “immune from liability,” and the university, adding insult to injury, slapped Weiss with a bill for more than $56,000 to cover its legal expenses. Weiss then suffered a stroke and years later passed away after her live-in caregiver siphoned money from her bank accounts, Elliott writes. No funeral was held.

What drives medical whistleblowers to risk degradation when most others stay silent? Elliott’s answers are complex and contradictory, perhaps intentionally so. On one hand, he notes the pragmatic case for intervention. “The act of whistleblowing rests on the faith that exposing a moral outrage will be sufficient to move others to respond,” he writes.

His interviewees’ stories and his own, however, show that whistleblowers’ primary motives are more idealistic. They act not because they expect specific results, but because of an inner compulsion; that is, a sense that if they did not speak out, they would no longer be able to tolerate their own presence. “How do you stand by and let these things happen?” a research coordinator with the pseudonym Sasha told Elliott after reporting an investigator who fudged study data. “You go to bed at night. You look yourself in the mirror. I don’t understand.”

Even so, Elliott is reluctant to put whistleblowers on a moral pedestal. Like social psychologist Philip Zimbardo, who contends that heroes are ordinary people in many ways, Elliott stresses that whistleblowers are as human and flawed as anyone else — and that some, like himself, have historically complied with immoral superiors. “Like the subjects in Stanley Milgram’s obedience experiments, I did as I was told,” he writes, reflecting on his time as a young doctor. “The possibility of objecting never occurred to me.”

Yet Elliott leaves a tantalizing question largely unexplored: how someone who’d never think to object becomes someone who considers objection not just possible, but necessary.

Recent research suggests regret’s festering effects play a role, as they may have for Elliott. In a 2022 study, would-be whistleblowers were galvanized by anticipating the remorse they’d feel if they didn’t say something. Other studies have found that assurances of social support — workplace managers who set an ethical tone, for instance — encourage those who see wrongdoing to blow the whistle.

Though Elliott doesn’t delve much into potential ways to make whistleblowing less daunting, his own experience likely steered him away from such optimistic framing. Even though an external review of the University of Minnesota’s research oversight program reported major flaws, no one at the university has yet admitted fault for what happened to the Seroquel study’s subjects. “It can be hard for whistleblowers to justify actions that have cost them so much and accomplished so little,” Elliott writes. “They need a story in which their sacrifice makes sense.”

Despite Elliott’s disdain for Hollywood narratives, part of what elevates his book is its attempts to construct such a sense-making story. In bringing lesser-known whistleblowers’ acts to the forefront, he bends their narrative arcs, however subtly, in the direction of justice. Years after speaking out, Peter Buxtun, John Pesando, and Mary Weiss — and even Carl Elliott — remain in the process of becoming.