Posted on March 24, 2018 at 10:16 PM
A special issue of IRB: Ethics & Human Research (March-April 2018) is all about “Listening to the Voices of Research Participants.” The main argument for making participants into something more like true “partners,” is that experienced research subjects have a lot to teach researchers. Rebecca Dresser points out that many developments in political science and philosophy emphasize the importance of personal experience as “a valuable source of knowledge.” Experienced research subjects can help researchers and IRBs spot problems that can raise ethical issues, or interfere with enrolment and retention. “Ethical and policy deliberations should include people who know what it is like to participate in research.” Stephanie Solomon Cargill follows Dresser with a discussion of how to get from the “why” to the “how.” Two more articles round out the special issue. None of them suggests one obvious piece of the puzzle: researchers themselves, and bioethicists who serve on IRBs and make research decisions, should raise our hands and sign up to be research subjects.
When I speak at bioethics conferences, I often ask my audience who has volunteered to be a research subject, and I am astonished at how few people respond. Jumping through the looking glass is a fascinating experience. I have been a volunteer for the REVEAL study, where I was told my APOE status and some approximation of my genetic risk for Alzheimer’s. I recently ended a five year stint in the VITAL study, where I took some combination of vitamin supplements and placebos daily. (I would not have believed how sick I got of doing that, nor how annoying those little round pills were when they rolled off the counter and dropped onto the floor. Only the tremendous esprit de corps generated by the newsletters and thank you notes and little holiday gifts—thanks, guys, for the keychain flashlight—kept me going.) I tried to volunteer for another Alzheimer’s study; I didn’t survive the initial screening, but I still learned a lot. Some of that learning made its way into my writing, some of it has helped me enormously as I sit on various IRBs.
Granted, this doesn’t solve the problem by a long shot. Few of us are likely to be of low income, or have an eighth grade education. Nonetheless, we can learn a lot from being “participant observers.” Look at the huge amount of wisdom that we have accrued from illness narratives of doctors who were forced to become patients. Why shouldn’t we enjoy at least some modicum of that wisdom from having ethicists volunteer to be subjects?
I would also argue that bioethicists, at least those of us who have been relatively unburdened by illness, have an obligation to participate in research. Actually, I believe everyone has a prima facie obligation to participate in research, because we are the beneficiaries of that research. But as bioethicists we are doubly beneficiaries: not only do we owe our good health to medical research, but many of us make a pretty good living writing about it. Don’t we have a duty to give back?