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Book investigates shocking medical research abuse

By Chris Hewitt, Star Tribune
Published: May 25, 2024, 5:48am

Movies such as “Erin Brockovich” depict whistleblowers as heroes who undergo tough times before earning the satisfaction that they’ve benefited humanity. University of Minnesota philosophy professor Carl Elliott says that’s not how it usually goes down.

Elliott, whose book “The Occasional Human Sacrifice” is out this month, knows from experience. Alerted by a 2008 series of articles in the Pioneer Press, written by Paul Tosto and Jeremy Olson (now a Star Tribune reporter), he and others investigated after the suicide of Dan Markingson, a mentally ill man who was part of a U of M study of a powerful drug. That began a frustrating quest for justice, not least for Mary Weiss, Markingson’s mother, that affected relationships with colleagues. (An external review eventually acknowledged flaws in the university’s oversight program.)

In his book, Elliott reflects on a youthful situation in which he failed to do the right thing and writes that he wonders now, “what I feel proud of and what I regret, the different choices I might have made, how my life might have gone if I had decided not to get involved. It has helped to talk to others who have gone through similar ordeals.”

Reflecting on the experience led Elliott, 62, to seek other whistleblowers, some as far away as Sweden and New Zealand. What he found is that most were unsatisfied with the results of their labors and that some regretted what they’d tried to do.

We spoke with the Minneapolis man about his book, subtitled “Medical Experimentation and the Price of Saying No,” and how whistleblowers often step into trouble they can’t imagine (the interview has been edited):

You write about the frustration of whistleblowing. But one case you discuss is the Tuskegee Syphilis Study, whose test subjects were unaware they were receiving no treatment. They eventually were compensated. Surely those whistleblowers were successful?

If any of the stories in the book had a lasting impact, it’s that one. But it took a long time [four decades]. The really interesting thing to me about Tuskegee is the way it is taught in medical schools, which put a much more optimistic, positive spin on it than it deserves. The researchers responsible for it were never punished. In fact, they were honored. Many of them went to their graves convinced that they had done nothing wrong.

But it has resulted in reform?

Yes, it has more than any of the other scandals I wrote about — or didn’t write about — to do with the current regulatory regime, which is flawed but better than it was before Tuskegee.

Many whistleblowers you met left the organizations on whom they blew the whistle. Did you think about leaving the university?

I probably should have. I didn’t feel as if I could leave or wanted to leave while the Markingson case was still alive because it would have felt like giving up. Afterwards, you become so contaminated with the experience of being a whistleblower or dissenter that it makes it difficult to leave. You become toxic. No one wants to be around you. This is what John Pesando (a former researcher at Seattle’s Fred Hutchinson Cancer Research Center who attempted to expose alleged abuses of patients there) says: “Once you blow the whistle, everybody is a little wary of you because they think, ‘When are you going to blow the whistle in my direction?’ ”

Would you do it again?

I probably would. I don’t think I’d do it in the same way. I do feel as if I have learned something from the experience and from talking to other people.

Comparing the cases in the book, it seems like a group of whistleblowers has a better chance at success than individuals?

Doing it alone is a recipe for disaster, for a kind of self-immolation. When I talked to Tom Devine at the Government Accountability Office — he does whistleblower law — he said that when a potential whistleblower comes to him, the first thing he tells them is, “Don’t do it. Going public will ruin your life. If there’s any way to get the information out without making yourself a public figure, do it.”

Were there any surprises in talking to whistleblowers?

I not only admired the people but actually liked spending time around them, really enjoyed getting to know them. If you talk to reporters — and I understand this — you will often hear that whistleblowers are a uniquely prickly, difficult, moralistic type of personality, that it requires this sort of personality to blow the whistle. I didn’t find that at all. Some of these people were extraordinarily gentle, kind people. Even the ones who had a contrarian streak were very funny.

How do you think the book will be received at the University of Minnesota?

Part of what happened as a result of that entire experience is my move from the medical school to the philosophy department. I don’t have a lot of reason to go back over to that [medical] part of campus much anymore. Which has made my life easier. But I’m a little nervous about how it’s going to go across. We’ll see.