The toll of truth: What happens when you expose medical wrongdoing?
Dan Markingson’s mother was worried about him. Her son, seriously struggling with mental illness, had enrolled in an AstraZeneca drug trial at the University of Minnesota. Over the next few months, his condition appeared to deteriorate, even as his mother Mary Weiss begged to get him out of the trial. “Do we have to wait until he kills himself or anyone else before anyone does anything?” she asked in a voicemail to the study coordinator. Three weeks later, in April of 2003, he cut his throat.
Looking back on the tragedy now, author Carl Elliott says, “I still have yet to find anybody who wants to defend it.” But for a long time, it didn’t seem like anybody wanted to do anything about it either. And as a faculty member at the university, Elliott quickly found himself frustrated and, as he writes in his new book, “The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No,” “rattled.” He started digging around, and in 2010 published a feature in Mother Jones, explosively titled “The Deadly Corruption of Clinical Trials.”
Now, Elliott, who writes in the book that “It is not in my nature to be confrontational,” has taken his experience as the jumping off point for an unprecedented look at some of the most galvanizing medical research scandals of the past several decades — and the impact they had on the individuals who brought them to light. He delves into the notorious Tuskegee syphilis experiments on Black men in the 20th century, the abuses against intellectually disabled children at the Willowbrook State School in the early 1970s, and four other shocking cases that reveal not just a stunning failure of ethics but a coordinated determination to silence and discredit the individuals challenging them. It's a chronicle of disappointment and loneliness, but also one of, in Elliott's word, of honor.
I spoke to the author recently about the lessons of the past, the toll of telling the truth, and why one whistleblower says that every one of them is just “an amateur playing against professionals.”
This conversation has been edited and condensed for clarity.
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You say in the book regarding people who are whistleblowers: there's a before and there's an after. You frame this book with your own experience. Tell me about your before and after.
If you had asked me before 2008 or so, “How things were going? Should I look at a job at the University of Minnesota?” I would have said, “Absolutely.” I don't feel the same way anymore, partly because there were lots of things that about the university in the way that the way it operates that I didn't know before. Particularly the way that everything changed for me after I wrote that Mother Jones article.
Compared to a lot of people in a similar position, I felt as if I was relatively well protected. I’m tenured here. I felt like I knew the material really well, because these are issues that I've been working on forever. I also felt as if I was protected because I didn't, at least in my own head, need somebody else to write the story. I could just write it myself. I felt like I had a strong network of fellow travelers, colleagues in the medical school, and particularly in the bioethics center, who would feel the same way about it.
You know, the Markingson case is not hard. It’s not a dilemma. It's just a matter of which abuses you want to highlight in that story. I still have yet to find anybody who wants to defend it. But doing what I did, not just writing about it for a national publication, but also just refusing to let it drop, really earned the resentment of my colleagues and former friends from the academic health center.
There are there are certain words that keep coming up in this book, and one of them is "loneliness." What often happens when someone points out these ethical violations, the repercussions are immediate and punitive, and the person is isolated.
It played out differently for almost everybody I talked to in the book. It feels like the further away you are from the scene of the crime, the better off you'll be, morally and emotionally and psychologically. For example, Peter Buxtun, there's a sense in which he's an insider, he's working for........
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