A few weeks ago I gave a talk in Seattle in which I pointed out that science is not sufficient to define moral behavior. A substantial part of that talk was a catalog of atrocities, such as the Tuskegee syphilis experiment. I said that in purely scientific terms, that was a good experiment; if the subjects had been mice, for instance, setting aside an untreated control group to study the progression of the disease would have been considered an essential part of smart experimental design. One could still argue that the needs of the many outweigh the needs of the few…if one were willing to distance oneself from the humanity of the subjects.
Yes, one can always retreat to the excuse that these were cases of bad science, where the scientists violated the rules of their own profession. But where do the ethical guidelines come from? Not science.
I missed a trick, though. I talked mainly about old cases, when there’s a clear case of the conflict between ethics and science playing out right now, right at my home university: the case of Dan Markingson, the young man who was enrolled in an experimental pharmaceutical study and kept there, even as his mental illness worsened, and who eventually committed suicide.
There’s a new article by a bioethicist on this case.
The research abuse in this case is so stunning that when I first learned about it I could scarcely imagine it happening anywhere, much less at the university where I work. In late 2003, psychiatric researchers at the University of Minnesota recruited a mentally ill young man named Dan Markingson into a profitable, industry-funded research study of antipsychotic drugs. The researchers signed him up over the objections of his mother, Mary Weiss, who did not want him in the study, and despite the fact that he could not give proper informed consent. Dan was acutely psychotic, plagued by delusions about demons, and he had repeatedly been judged incapable of making his own medical decisions. Even worse, he had been placed under an involuntary commitment order that legally compelled him to obey the recommendations of the psychiatrist who recruited him into the study.
For months, Mary tried desperately to get Dan out of the study, warning that he was getting worse and that he was in danger of committing suicide. But her warnings were ignored. On April 23, 2004, she left a voice message with the study coordinator, asking, “Do we have to wait for him to kill himself or someone else before anyone does anything?” Three weeks later, Dan committed suicide in the most violent way imaginable. His body was discovered in the shower of a halfway house, his throat slit so severely that he was nearly decapitated, along with a note that said, “I went through this experience smiling.”
You know, I’ve been impressed with my university on many occasions: their commitment to academic freedom has been exemplary, my interactions with the university’s lawyers (I’ve had a few of them…) has always left me satisfied that they are fair and pragmatic. But this is a failure not just of the scientists involved, but the administration of the university. It’s an embarrassment.
Yet for three years the University of Minnesota has managed to bluster and stonewall its way through all the criticism, insisting that it has already been exonerated. Even when the state Legislature passed “Dan’s Law” in 2009, banning psychiatrists from recruiting mentally ill patients under an involuntary commitment order into drug studies, the university continued to insist it had done nothing wrong.
I suspect that the stonewalling is out of fear of opening the door to legal action against a university that is already struggling with constantly dwindling support from the legislature. But it’s necessary that they confront this issue and deal with it honestly — it’s the only way to restore confidence with UM’s ethical culture, and it’s the only way to make sure there are no future Dan Markingsons.
And it’s that last bit that is the important concern.