What Nemo, and Departed Guides, Teach Us about Research Ethics

Dahron JohnsonMany moons ago, I walked into a large meeting room to attend my first session of my first PRIM&R event. I was even more green than that: I’d only been involved with my IRB for a month or so, and was still getting accustomed to the lingo—and I wasn’t anything approaching a scientist. Far from it, I was a mere six months in to my internship and residency in healthcare chaplaincy. So, when I walked into the Advanced Research Ethics pre-conference session of the 2009 Advancing Ethical Research (AER) Conference, I was a fish lost in unfamiliar seas.

Luckily, I had some excellent guides to help me navigate that first day. The faculty included folks like Emory’s Neal Dickert, and a raft of people from NIH’s Bioethics department: Christine Grady, Emily Largent, Annette Rid, Seema Shah. However, one personality stood out. With an eyebrow raised over his glasses, and a half-smirk that seemed primed for mischief—or shaking things up—a gentleman presented on the mutually implicated concerns of paternalism and consent, coercion and autonomy. This was Alan Wertheimer, a recent transplant from a long tenure at the University of Vermont to the Bioethics faculty at NIH. I couldn’t help but be intrigued: I was in the midst of considering my own notions about a shift “From Autonomy to Empathy,” and while he and I weren’t in the same place on things (especially being the intellectual laggard that I am), that he was willing rattle the glass of the ethical fishbowl he thought we might have placed ourselves in, made me an instant fan.

Alan WertheimerAs it turned out, I ended up attending quite a few more sessions that year led or co-led by Dr. Wertheimer. In the years that followed, I’d search out his name hoping that a session he led would be a good fit. I even remember fondly after the close of the conference in San Diego one year, we happened upon each other roaming the aisles of a toy store, both of us looking for gifts to take home, and talking casually about the lay of the ethics landscape before going our separate ways.

Dr. Wertheimer died this past April, and with every session at the 2015 AER Conference—and even though I cannot claim to have been a friend or to have known him outside the moments described above—I grieve his passing. As I see other faculty with which he presented, I want to ask, “What do you remember about Dr. Wertheimer? Do you miss him, too?”

However, such feeling also prompted me to hear presentations with Dr. Wertheimer’s perspective in mind. So, as panelists discussed “The Challenges of Responsible Mobile Health (mHealth) Research” at this year’s AER Conference, I wondered what he would think about obtainingconsent via app. And later, I felt sure that he would commend the efforts of someone like Dr. Justin Snyder, quality management coordinator at the Pennsylvania State University Office for Research Protections, who worked to demonstrate through a reporting of the perspectives of research participants, that perhaps our constructions of things like “vulnerability” and “risk” need to be a lot more dynamic and responsive to the perspective, engagement, and activity of the participants themselves.

Dr. Wertheimer once said that “We need to guard against debasing the currency; [that is,] we need to treat [concepts such as] vulnerability as a scarce resource (like profanity).” I take him to mean by this, not some revisionist notion of the term, but that we should avoid over-using, over-classifying persons as vulnerable—or defining them only in our terms of their vulnerability—otherwise the concept loses its punch, its power. Talking at length with Dr. Snyder after his presentation, I think he’d be inclined to agree, as he stressed that we needed to find ways to work with participants to help define their own level of acceptable risk (remembering here the symbiotic relationship of our constructions of vulnerability and risk).

A much simpler way of expressing this might be seen in a brief scene from the Pixar classic, “Finding Nemo“. The father fish, having endured a long search to find his missing son, says dejectedly to the friend he’s made along the way that, “I promised I’d never let anything happen to him.” The friend, Dory, responds, “Hmm. That’s a funny thing to promise.” With the father asking what she means, Dory replies, “Well, you can’t never let anything happen to him. Then nothing would ever happen to him.” To paraphrase Dory—and with Dr. Wertheimer’s rethinking of research ethics well in mind—we shouldn’t approach our commitments to ethical research—to the notions of “vulnerability” and all else—as single-sided, and single-minded, promises that we’ll never let anything happen to anybody. Because if we did, nothing would happen: nothing could be researched or discovered for any of us. We hold principles—vulnerability, risk, and so on—but they should not hold us. We pursue them mutually in the midst of our projects not simply to protect against harms, but also to work together in shared opportunities; to empower researchers and the patient-participants with whom they work. Thank you, Dr. Wertheimer, for guiding me to remember this before we journeyed forth into our separate seas.

Dahron Johnson, BA, chaplain at the Tennessee Valley Healthcare System, is a member of the PRIM&R Blog Squad for the 2015 AER Conference. The PRIM&R Blog Squad is composed of PRIM&R members who blogged here, on Ampersand, to give our readers an inside peek of what happened at the conference in Boston, MA.