Carl Elliott is a Hastings Center Fellow and a professor at the Center for Bioethics at the University of Minnesota. His most recent book is White Coat, Black Hat: Adventures on the Dark Side of Medicine.
This post originally appeared at the Hastings Center's Bioethics Forum.
Over the past month, a petition asking the governor of Minnesota to investigate a research scandal at the University of Minnesota has been steadily gathering momentum. The scandal in question originated in 2004 with the suicide of Dan Markingson in an AstraZeneca-funded study of antipsychotics. The petition to investigate the scandal is backed by a number of high-profile supporters, among them Lancet editor Richard Horton, former BMJ editor Richard Smith, three former editors of the New England Journal of Medicine (Marcia Angell, Arnold Relman, and Jerome Kassirer), Wellesley College historian Susan Reverby, who uncovered the Guatemala syphilis studies, Hastings Center co-founder Daniel Callahan, and over 200 scholars in bioethics, clinical research, medical humanities, and related disciplines.
The petition also has a noticeable gap. Very few signers come from the University of Minnesota. In fact, only two people from the Center for Bioethics have signed: Leigh Turner and me. This is not because any faculty member outside the Department of Psychiatry actually defends the ethics of the study, at least as far as I can tell. What seems to bother people here is speaking out about it. Very few faculty members are willing to register their objections publicly.
Why not? Well, there are the obvious possibilities—fear, apathy, self-interest, and so on. At least one person has told me she is unwilling to sign because she doesn’t think the petition will succeed. But there may be a more interesting explanation that I’d like to explore. For those who are unfamiliar with the scandal, however, let me backtrack briefly and explain the events in question. (You can read the longer version in Mother Jones magazine and additional background in a Bioethics Forum post.)
In late 2003, Dr. Stephen Olson, the head of the schizophrenia program at the University of Minnesota, recruited an acutely psychotic young man named Dan Markingson into an AstraZeneca-funded research study of antipsychotic drugs. Olson enrolled Dan despite the fact that he had been repeatedly judged incapable of giving informed consent, despite the fact that his mother objected to his participation, and despite the fact that Dan had been placed under an involuntary commitment order that legally compelled him to obey Olson’s recommendations. For months, Mary Weiss, Dan’s mother, tried desperately to get her son out of the study, warning that his condition was worsening and that he was in danger of committing suicide. Her warnings were ignored. In May 2004 Dan stabbed himself to death with a box cutter so violently that he nearly decapitated himself.
The research study itself was plagued by ethical problems: financial incentives to keep subjects in the study as long as possible, conflicts of interest for the investigators, an inexplicable gap in the exclusion criteria, and a questionable scientific rationale. AstraZeneca was eventually forced to pay $520 million in fraud penalties, and some of its misconduct was traced back to the University of Minnesota.
You might think that events this alarming would prompt a university investigation. That is not what happened. Instead, the university blocked Mary’s efforts to get Dan’s medical records, and when her lawsuit against the university was dismissed on grounds of sovereign immunity, it filed a legal action against her, demanding $57,000 in legal costs. Even as evidence has accumulated suggesting a much larger problem involving more psychiatric studies and more mistreated subjects, the university has stonewalled every effort to get to the truth.
Why would faculty members remain silent about such an alarming sequence of events? One possible reason is simply because they do not feel as if the wrongdoing has anything to do with them. The University of Minnesota is a vast institution; the scandal took place in a single department; if anyone is to be blamed, it is the psychiatrists and the university administrators, not them. Simply being a faculty member at the university does not implicate them in the wrongdoing or give them any special obligation to fix it. In a phrase: no guilt, hence no responsibility.
My view is somewhat different. These events have made me deeply ashamed to be a part of the University of Minnesota, in the same way that I feel ashamed to be a Southerner when I see video clips of Strom Thurmond’s race-baiting speeches or photos of Alabama police dogs snapping at black civil rights marchers. I think that what our psychiatrists did to Dan Markingson was wrong in the deepest sense. It was exploitative, cruel, and corrupt. Almost as disgraceful are the actions university officials have taken to cover it up and protect the reputation of the university. The shame I feel comes from the fact that I have worked at the University of Minnesota for 15 years. I have even been a member of the IRB. For better or worse, my identity is bound up with the institution.
These two different reactions—shame versus guilt—differ in important ways. Shame is linked with honor; it is about losing the respect of others, and by virtue of that, losing your self-respect. And honor often involves collective identity. While we don’t usually feel guilty about the actions of other people, we often do feel ashamed if those actions reflect on our own identities. So, for example, you can feel ashamed at the actions of your parents, your fellow Lutherans, or your physician colleagues—even if you feel as if it would be unfair for anyone to blame you personally for their actions.
Shame, unlike guilt, involves the imagined gaze of other people. As Ruth Benedict writes: "Shame is a reaction to other people’s criticism. A man is shamed either by being openly ridiculed or by fantasying to himself that he has been made ridiculous. In either case it is a potent sanction. But it requires an audience or at least a man’s fantasy of an audience. Guilt does not.”
In scandals, this imagined audience can produce very different, even opposite, reactions. On the one hand, it is what leads many people to try so hard to keep scandals secret. This impulse to cover up wrongdoing can be toxic, as the Catholic Church has discovered. But it is also what leads insiders to speak out publicly against a scandal. By speaking out, you show that you are separating yourself from the wrongdoing in order to maintain your honor and self-respect. You are saying to the world, “Do not think that I am a part of this.”
Shame and honor may seem like old-fashioned ideas, but if you read the comments left on the petition by University of Minnesota alumni, you cannot help but be struck by their language. “How shameful for UMN, my alma mater.” “I am a graduate of the University of Minnesota and want to be proud of my school, but following this case has made me deeply ashamed.” “I am a University of Minnesota alum, and I am ashamed of my alma mater right now.” “To call this merely shameful would be wholly inadequate.” “Attended U of MN Medical School and then U of MN Psychiatry residency – ashamed of the Psychiatry Department.” “I am a graduate (CLA, 1981) and ashamed of the way the University continues to handle this tragic case.” “The University's legal team should also be ashamed of their behavior in further victimizing this family.”
Obviously, this shame is something I understand, or else I would not be working so hard to raise awareness of the petition and convince others to sign on. (You can sign the petition here.) I also believe that the truth will eventually come out, and when that happens, there will be more than enough shame to go around. The refusal to investigate will only make things worse. As Jesse Ballenger writes on the petition, “As a faculty member at a university (Penn State) now notorious for failing to investigate abuses, I find the refusal of the University of Minnesota to confront this scandal sadly familiar.”
Editor’s Note: Beacon Broadside’s editor, Jessie Bennett, is one of the University of Minnesota alumni quoted above.