We don't remember their names, sometimes we don't even know they existed, but whistleblowers have exposed some of the biggest scandals in history, and yet, says an American bioethicist whistleblowers, despite their sacrifices, are often forgotten or even worse they are vilified.
Carl Elliott is a professor in the Center for Bioethics and the Departments of Pediatrics and Philosophy at The University of Minnesota, who became known for his efforts to uncover and stop medical malpractice in his own workplace and has since made a study of whistle-blowing.
Back in 2003 the University of Minnesota was carrying out an experiment to look at the effects of anti-psychotic drugs on patients who had already experienced their first psychotic episode. When a young man participating in the study committed suicide,
Professor Elliott spent a decade trying to get the University of Minnesota to admit to the study's failings and to change the way it conducted such research.
Carl Elliott Photo: Carl Elliott
Prof Elliott tells Kim Hill that when the man was admitted, he was threatening mass murder.
“Rather than giving him standard treatment, they had him involuntarily committed and then coerced him into an industry-funded drug trial, over the objections of his family. His mother thought he was dangerous and unable to consent and tried for months to get him out of the study, warning that he was going to kill somebody or himself, and eventually he did. He nearly decapitated himself with a boxcutter.”
He became aware of what happened when two local reporters did a four part series on the study including the man’s death.
“I was astonished because it was at my own university and had happened four years ago and I had no idea. The university had managed to keep it quiet.”
Prof Elliott implored the university to do something about what had happened but was rebuffed. He dug around for more information, particularly the university’s connection to pharmaceutical company AstraZeneca, and ended up publishing a piece about what had happened in Mother Jones in 2010. He said it accomplished nothing other than making the university extremely angry.
“I was treated like a crazy person for objecting to this. It seemed so self-evident to everyone at the university that they’d done nothing wrong.”
He wasn’t alone in pursuing a response from the university, with staff from different departments and his own calling for an audit. What turned the tide in their favour was when former Governor of Minnesota, Arne Carlson, pressured the legislature into getting an external audit into the medical school.
“It took nearly a year, but eventually came out and was extremely on our side. It was a scathing report.”
In 2014, Arne Carlson was quoted as saying “we’re in the midst of a massive cover-up. The university hired [Prof] Elliott because it found him to be one of America’s most outstanding bioethicists. The moment he comes up with something that is sensitive to them, he becomes the village idiot.”
Prof Elliott laughs and says he was less of a village idiot and more of a Judas figure within the university, treated as a traitor to the medical school.
What also helped get the external audit was the discovery in 2014 of a second victim in the same trial. So, did the audit force a change in behaviour?
“No, it hasn’t changed. That’s the alarming and disheartening thing about most scandals, things rarely change. There have been efforts at public relations around research oversight at the university and I wouldn’t say that nothing has changed, but I don’t think things have changed in a way that are going to keep research subjects safe.
“One of the things I’ve learned from writing this book is that being right doesn’t make you universally liked, in fact it often makes you hated even more. There was a lot of validation that came from the external vindication, but there haven’t been any apologies and no one has said ‘you were right about this’.”
He says got the feeling from the university that they felt other medical schools are doing the same or worse, but they weren’t getting called out in the same way.
Prof Elliott says nothing happened to the two individuals who were running the study. One continues to work at the university and the other retired and has since died.
He says whistleblowers often feel ashamed and traumatised after blowing the lid off scandals, and it can hit hard when there are no repercussions for what they reveal. Although he describes his own experience as being a dark time, he’s met other whistle-blowers who have been left with regrets and shame that can last decades.
“It really marks people in the deepest possible way. It’s what I’m trying to figure out with the book. I think it has something to do with what feels as if you have no choice but to do – acting in an honourable way, in a way your conscience tells you to act - and then being punished and exiled as a result of it.
“This sense that you’re being cast out from the community that you get your identity from, that gives you your self-respect, they reject you for precisely the reasons that you’re acting and you feel as if you’re compelled to act. I think there’s something deeply traumatising about that and it’s very difficult to get over.”
Prof Elliott says the negative connotations of whistle-blowing are reflected in the term itself, which didn’t emerge until the 1970s to give a more positive spin on what had, until then, been ‘snitch’, ‘turncoat’, ‘traitor’, ‘narc’ and so on.
It was a reaction to the fact that whistle-blowers in the 1970s exposed things like the Pentagon Papers and the Tuskegee syphilis experiment. A new word was needed to cast the actions of these people in an honourable way.
The Tuskegee syphilis experiment, where poor black men were infected with syphilis and left untreated so the US public health service could track the progression of the disease, is one of the cases that illustrates why.
Peter Buxtun, a public health worker tracking syphilis in San Francisco in 1965, overheard a conversation about the experiment where those conversing said an elderly man had seen a GP who tried to treat him for his advance syphilis, but was blocked by the US public heath service.
“Peter overheard this and was kind of stunned, almost disbelieving, that this could be going on. It was exactly the opposite of what he was doing. His entire job was to bring people in and have them treated so they didn’t transmit the disease to anyone else. And here in Alabama they had, his organisation was conducting a study that was preventing people from being treated.”
Around 400 men had syphilis in the experiment and were never told by the US public health service that they had an infectious disease.
“It’s unbelievable, it took Peter so long to convince people there was anything wrong with it. He tried convincing people in the public health service, they dismissed him. It took him until 1972 to even convince reporters that this was something worth reporting.”
Prof Elliott says that the whistle-blowing in that incident was quite rare because Buxtin acted entirely alone. Studies have shown that people tend to keep their mouths shut if they feel they’re alone in their protest, but are much more willing to speak out if there are others that support their opinion.
For instance, Jock McLean and Bill McIndoe worked together in exposing the “unfortunate experiment” the National Women’s Hospital in New Zealand that resulted in women having worse rates of cervical cancer.
He says the way New Zealand handled the scandal and sanctioned the doctors involved was laudatory and hopes other countries will look at what happened here and apply it at home.
“To me, the remarkable part about the Cartwright report is that there hasn’t been a major research scandal since. The reforms that were instituted have kept research subjects safe.
“Our main equivalent would be the Tuskegee syphilis study. That got a tremendous amount of national attention, there was a senate investigation, there was a class action lawsuit, there was a commission that looked into it. There were a series of reforms instituted to oversee research in a way that was intended to make sure something like Tuskegee didn’t happen again. But, of course, it’s happened again and again and again. The reforms haven’t worked. Here [in New Zealand] they worked.”
He says he admires all the whistle-blowers he’s looked at in different ways.
“What I feel sad about is that so many of them have not been properly recognised for what they did. They sacrificed a tremendous amount and then were forgotten and, if not forgotten, vilified."
Prof Eliott is currently researching and writing a book (the seventh he's written or edited) about the history of whistle blowing, which includes consideration of the 1988 Cartwright Inquiry here in New Zealand.
On Saturday, he was at the Association of Bioethics and Health Law/New Zealand Bioethics Conference at the University of Otago in Dunedin to give a talk called Honor, Shame and Exile: The Moral Geography of Whistleblowing in Research on Human Subjects.
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