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Robert Klitzman: Human Subject Research and Its Discontents

Utah Public Radio interviewed Bioethics director Dr. Robert Klitzman about his new book, The Ethics Police?, which focuses on the boards that review human subject research and the ethical dilemmas that surround them.

Most notably, Klitzman explained his personal connection to human subject research, and his thoughts on the power and limits of such experiments:

My father, at 78, developed leukemia. Unfortunately, the doctor said there was no treatment available at the time, but he said there was an experimental chemotherapy we could try. It would be an experiment. Without it, he would live for three months, and with it, there was a 50 percent chance he would live three to eighteen months.
My father didn't know what to do. He was a hard realist. My mother had survived the Depression. She said, "Don't do it, let nature take its course." I, as a newly minted doctor was full of hope for science, said, "You should try it, it will be good, science does wonderful things." We decided to do it.
The next three months were terrible for him. He was nauseous all the time. And he said, "If this is what my life is, I don't want it." He died, three months later to the day.
The doctor said afterward, "Well, the experiment worked! The number of white blood cells had, in fact decreased. But,” the doctor said, "The patient died." I was horrified because I felt: had I made the wrong decision? had I pushed him too much?
I suddenly realized how hard it is for patients and their families who face these issues all the time about whether to be on experimental drugs. I felt the doctor could have explained things better. If the doctor had said, "There's a 50 percent chance that this will do nothing for him," as opposed to being very upbeat about it, we may not have said yes.
I have done research, and I'm happy to get patients [to participate] in my studies. I suddenly thought, "Wait a second, this is a very complicated area." Science does many wonderful things for us. We have great drugs that help many of us in many ways, but at times, it goes too far. And at times, particularly when drug companies are scrambling around harder to find drugs, and there is more money involved in the system, and drug companies are charging $80,000 a patient for certain drugs. I think we need to think more seriously about a lot of these [ethical] issues.

Listen to Dr. Klitzman’s interview in its entirety on Utah Public Radio.