In 2008, Carl Elliott, a professor in the University of Minnesota’s Center for Bioethics, read an article by the Pioneer Press about a young man named Dan Markingson.
Markingson had been committed with a psychotic illness. Against the continued protests of his mother, he became a subject in an experimental clinical trial for an anti-psychotic drug called Seroquel through the University of Minnesota. His mother continued to protest after Markingson was discharged to a halfway house, where his mental health quickly deteriorated. She worried he’d kill someone, or himself.
He later did kill himself -- nearly took off his own head with a box cutter. He left a note saying he went through the experience “smiling.”
It all seemed so damning to Elliott. So damning, that he wondered how he’d never heard of it.
“I got back from a sabbatical and started asking questions,” he says.
He conducted his own investigation, and even sat down with Markingson’s mother, who seemed rational and thoughtful even after people at the U of M had made her sound unreasonable. Elliott published his own article on the botched study in Mother Jones shortly afterward. He thought some national attention would force the U of M to reckon with its actions, perhaps even to make reparations to a mother robbed of her son.
“I was completely wrong,” he says. “They ignored it completely.”
That was the beginning of Elliott’s fascination with medical research malfeasance and whistleblowers. He was recently awarded a Guggenheim fellowship – a coveted research grant awarded each year to people who demonstrate an “exceptional capacity for productive scholarship” -- to write a book about those who succeed in bringing nefarious medical research practices to light. Once he got started, he was surprised to find out just how few they are. Whistleblowers in the medical research field are hard to come by.
“It’s far more common for the doctors and the researchers to know about all of it, and basically do nothing for years, even while the patients are being treated in the most horrific ways,” he says.
Why perfectly good people will collude to hide the mistreatment of fellow human beings – ostensibly for the purposes of saving lives or forwarding human understanding – is one of the questions Elliott is trying to answer.
One thing Elliott has already uncovered in his research: there are few, if any, rewards for being a whistleblower, if you don’t count jeopardizing your career, losing all your friends, and turning your colleagues and institutions against you.
Take the case of the Tuskegee Syphilis Study. Most in the medical field know about the United States Public Health Service and the Tuskegee Institute’s crime, exposed to the world in 1972. They allowing syphilis to run untreated through the bodies of hundreds of black men, just to see what would happen. But every time Elliott asked his students about the incident, nobody can tell him who eventually uncovered the whole mess.
The answer is Peter Buxtun. He heard about the Tuskegee study from his colleagues and filed an official protest with the Service’s Division of Venereal Diseases, which was promptly rejected. Things didn’t come to light until he leaked information to Jean Heller, a reporter with the Washington Star.
Buxtun is still alive, and living in the same apartment he’d been living in when he’d blown the whistle on Tuskegee. Elliott spent a day asking him about that time in his life. He’s not who Elliott expected him to be, he says. He was thinking he’d find a Berkeley hippie grown jaded with the world’s institutions. What he found was a gun-toting libertarian who was more than happy to relive old times.
“He’s remarkably good humored about the whole thing,” Elliott says.
But Buxtun is an exception. Elliott also met with Ron Jones, who exposed the New Zealand National Women's Hospital, which allowed dozens of women’s carcinoma in-situ of the cervix to go untreated for the sake of research -- all without their consent. Their carcinomas blossomed into cancers, and some of the women died as a result.
Jones had been a junior obstetrician and gynecologist at the time. He and a few senior colleagues published a scientific paper on the study in 1984 and exposed the truth. Everything Jones and his colleagues had written about turned out to be true, and the experiment became known throughout New Zealand as “The Unfortunate Experiment.”
But that didn’t help Jones. The hospital circled the wagons in an effort to protect itself, casting doubt on Jones and his fellow writers. No apology was ever made. Colleagues and friends abandoned him, and he became a pariah in his own field. Meanwhile, his wife was dying of breast cancer.
Blowing the whistle, Elliott says, almost ruined Ron Jones’ life.
“He still feels bitter and betrayed,” Elliott says.
Then there’s Martha Stephens, the untenured English professor from Cincinnati who risked her career to expose the terrible result of a full-body radiation study being conducted in the ‘60s and ‘70s.The Pentagon paid a radiologist at the University of Cincinnati to expose patients to intense doses of radiation in order to determine how much, say, a soldier could withstand before becoming disabled, or disoriented, or dead.
Twenty-one patients died within a month, and it took a professor whose previous book had been on Flannery O’Connor, not medical research, to expose it. The university has since called the study “regrettable,” and allowed the out-of-the-way plaque commemorating the 70 patients who eventually died to languish over some overgrown bushes.
There isn’t much love for a whistleblower. Before the word was coined in the ‘70s, in the wake of Watergate and other major government scandals, the word used for those who uncovered wrongdoing in their own institutions was usually “snitch” or “rat.”
Sociology and psychology have wrestled with what motivates a whistleblower to stick to their convictions long enough to be ruined -- or nearly ruined -- by them. Mostly, these people have nothing in common, Elliott says. But three things make a whistleblower more successful. One: having friends in the effort. Elliott knows from experience that that helps.
“It helps if you don’t feel so alone and isolated in your dissent,” he says.
Then there’s having a degree of separation from the people you’re trying to expose. It can sometimes be too hard to turn in your friends and colleagues for wrongdoing.
The last: stubbornness, Elliott thinks. “They just couldn’t let it go.”
Elliott can’t either. He’s planning on taking a sabbatical in 2019 so he can travel and meet more whistleblowers. He also can’t let go what happened at his own university, and how hard it was to pry the truth – much less any admission of wrongdoing – from a place supposedly dedicated to the highest echelons of the human mind and spirit.
He hasn’t gotten any kind of formal congratulations from the U of M for winning his fellowship, Elliott says. But he has gotten plenty of warm regards from his colleagues.
More from News