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.
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 the Public Health Service. But Tuskegee is happening in Macon County, Alabama, thousands of miles away. He's not part of the fraternity of doctors that he’s speaking out against. He's not really counting on a career in public health. He's just doing this temporarily, working as a contact tracer in San Francisco. He was probably the single most undamaged figure in the home in the whole book.
But the people like Ron Jones in New Zealand, or the four whistleblowers in Sweden at the Karolinska Institute or Mike Wilkins and Bill Bronston at Willowbrook, or John Pesando at Fred Hutch, these were were very close to the study and very often the patients, and they could see the abuses and the harms in this very immediate way. You talk about Willowbrook and that 1972 news report. I didn't see that film until I was in my fifties, and it still made me cry. Just unbelievable scenes of deprivation and neglect and abuse. Can you imagine what it would be like for Mike Wilkins and Bill Bronston to go to work in that every day, and know that the kids that they were admitting were going to be treated like this?
Sometimes there's a sense of complicity in it. Even if you're working as hard as you can to improve things, there's also this feeling that you're a part of this. Sometimes just knowing about it makes you feel as if you're a part of it, and you have to tell other people. But there's also the sense of disloyalty that you feel about going outside the group, especially if you have the idea that people are going to be punished that you might know and really, maybe even like. All this is very difficult.
You ask about loneliness. The original title for this book was “Lonesome Whistle,” after the old Hank Williams song, because of that sense of isolation, particularly if you've gone into this whole thing alone, which some people do. Then you find yourself totally isolated. Most of the people I talked to really had no idea where to look for support, no idea that other people had gone through this. It's not like there's a set social script out there for how to blow the whistle.
I use John Pesando’s remark as the epigraph, “Every whistleblower is an amateur playing against professionals.” That’s exactly what it's like, because on the other side, there is a script. There is a script for the PR people and the crisis managers and the attorneys in the organization on the other side. They know how to deal with whistleblowers. They've been through it many times. But every whistleblower is doing it for the very first time, and they're just stumbling around in the dark. And then they find themselves lost and isolated and ostracized. There's often a lot of effort to discredit whistleblowers.
You have someone in the book say that they thought that if they reported this, then it would be fixed. The disappointment of having that be turned on you, I imagine is quite palpable.
It takes a certain amount of idealism to do this. None of the people I talked to struck me as idealistic in any way, but I'm talking to them after the fact. But they often tell a story of this sort of innocence — “I was so naïve back then, I thought that this would happen.” One of the things that you need to think will happen is, if everybody else sees what I've seen, if they know what I know, they're going to feel the same way. They're going to feel outraged and angry and demand justice. And it almost never happens that way.
The authorities don't leap into action. Their colleagues are not grateful. Their friends very often don't want to be seen around them because they're so toxic and radioactive at work. So it is very lonely. It's even lonely in the sense that I think a lot of people who do this struggle to tell themselves a meaningful story about it. Unless there are other people who've been through the same thing that you can talk it through with, you don't really know how to develop that story. If it's just a series of events that are senseless, then it's just very difficult to recover from that. The struggle, in the absence of any real success, is trying to tell yourself a story in which this all has some sort of meaning, and which you can, if not feel good about it, at least make your peace with it. That is not the typical David and Goliath story.
We can think, Tuskegee, that was one hundred years ago. It's been fifty years since Willowbrook. What is the relevance of these cases right now in terms of what we need to understand about medical experimentation?
A lot has changed. I teach a class on research scandals. We start with the old ones, from the 1950s, 60s, 70s. Then we talk about the post-Belmont Report, post Common Rule studies. Almost everybody agrees the ones that came before the 1970s and were exposed during the 1960s and early '70s, it's almost certain we don't have anything like that now. The motivating force behind a lot of the scandals in the '50s, '60s, '70s was I think largely driven by hubris combined with genuine humanitarian goals, but also the conventional rewards for success in universities — promotion, tenure, prizes, status, more than anything else.
Those things are still there, obviously, but you have this financial incentive that has come into play since the 1990s. Backing by the pharmaceutical industry, the privatization of clinical trials and the development of contract research organizations by the biotech industry, all of these things have introduced an additional incentive, which is not just about getting famous, it's about getting rich as well. So the shape of the scandals tends to be slightly different.
We live in an age of misinformation, disinformation, conspiracy theories, paranoia, skepticism. This history of exploitation and abuse and harm is real. How do we then reassure someone who is looking at maybe doing a clinical trial now? How do we approach our medical system with the right due diligence as patients?
I think that's just really hard. I understand the way that question presents itself to people, which is, “What do I do to protect myself?” But I actually think it's not the right question. The right question is, “What can we do to fix the system so that we all have confidence in it?”
One of the horrible things that I went through when I was writing this book is my father got very sick, and for about a three year period, he was in and out of the hospital all the time. He's a doctor. My brother's a doctor. I have an MD behind my name. This was all happening within my father's practice area in South and North Carolina. I felt as if we weren't there with him at all times, things would just go south, immediately. He was powerless against the system, even a guy with all his medical knowledge.
What would it be like, if you're trying to negotiate this and you have none of that? No power? No education? No money? How are you really supposed to protect yourself? That's why usually, the victims of these trials that have gone bad are vulnerable in some way. They're poor, they're uneducated, they're children that are mentally ill, they're mentally disabled. And one person, or even one family up against this giant medical industrial complex, that's a losing battle.
What we need is reform of the system, so that we don't have to worry about this. The problem in academic health centers is that reflexive tendency to say, “Nobody can know about this. We have to keep it quiet. If we have a victim coming forward, or we have a whistleblower coming forward, we have to discredit them, so that no one will actually believe what they're saying. If we can't discredit it, then we need to sweep it under the rug. We need to keep it as quiet as possible. We need to settle it, and we need to settle it with a confidentiality agreement so that nobody knows about this. And then, if they do know about it, never apologize. Never compensate the victims. Never admit wrongdoing.”
Not only is it ethically, morally wrong to do that, I think it's also counterproductive. Because how are you supposed to trust the system, when every time something like this comes up, they lie about it? They dissemble and they stonewall the press, and they do every time. You know, people are forgiving, and if you're honest with someone and admit that you made a mistake, and apologize to them for it, very often, that's really all they want. They just want to be able to trust somebody.
In many of the stories that you write about in this book, we still would not know about these cases were it not for the press. What is the relation then between the whistleblower and getting that story out? And how important is that messenger?
It's really important, but for the whistleblower, it's a gamble. It can all go south very quickly if you're in touch with the wrong reporter. They may breach confidentiality and out you when you're not planning on that. They might betray you and portray you in a very poor light in the story. They might say they're going to work on it, and stonewall you for years and years and never actually do anything. They may have the story killed by an editor somewhere up the line.
That's what I mean about whistleblowers being amateurs. None of them have any idea how the press works. They don't know the difference between an investigative reporter and a science reporter and a beat reporter. They have no idea of which one they should find. It's just a matter of luck. Almost every story in the book, they were lucky to find good reporters, and in some cases, stunningly effective results.
In this book you use a word that by your own admission is complicated — honor. We all in our own way have to confront our own ethics every single day. Why is that concept so meaningful to you?
A couple of things. One, the research oversight system is an honor system. It was set up as an honor system intentionally. We could have had a regulatory system. After Tuskegee, Willowbrook, all those scandals that came out in the early 1970s, there was a big push for a full-blown regulatory system, like you would have in factories or mines.
The medical research establishment did not want that kind of oversight system. They pushed back very hard, and what we got is this peer review system, which basically says, “We will trust researchers to do the right thing.” That oversight system works by telling them to submit a lot of paperwork about what they plan to do. We trust them to fill out the paperwork, honestly, to report their results, honestly, to do what they say they're going to do in the study. It's like an honor code. But any kind of honor code depends on people who see wrongdoing to report it. That's what we don't have in the oversight system. We have an honor code, but we don't really treat it like an honor code.
The other thing is that when I first started talking to whistleblowers, there was a way of talking that puzzled me in the beginning. If you asked them, “What led you to do this?” inevitably, there would be something in there about, “Well, how could I look at myself in the mirror? How could I hold my head up? What would I say to my children?” They weren't making a moral argument or talking about the Hippocratic Oath. They didn't talk about professional ethics, they didn't talk about the Bible. Although sometimes people were being harmed and that obviously played a huge part in it, the way they talked about it was about themselves. “How do I live with myself?” Asking the question, “How do I maintain my self-respect, in the absence of respect from anyone else now?” seemed to be at the core of their moral problems.
At a certain point, it occurred to me, this is the ethic of honor. Honor is all about your obligations to yourself. It's about maintaining your self-respect. I hear it in their stories. I think the reluctance of anybody these days to talk about honor, at least in a positive way, is that it has a very dark side to it. The dark side is violence. The number of wars and mass murders and bar fights and any number of violent encounters that result from someone feeling as if their honor has been challenged, or their self-respect has been challenged, or they've been insulted in some way, is very much part of the honor ethic. I could have used a word like integrity. But what distinguishes the honor piece of it is that it's also important to an honorable person that they be seen as honorable by other people. And this is why discrediting whistleblowers works so well.
