Fun fact #1: The first professional organization I joined was PRIM&R, in 2009. I had recently begun serving as a voting alternate on the IRB at the Veterans Administration center where I worked as a chaplain resident. I had been enjoying the IRB work (yes, really—and that was even in the all-paper days) and as it happened, the 2009 AER Conference was taking place in my backyard: Nashville, TN.
The conference sessions I attended were eye-opening and perspective-enlarging. More importantly, presenters and fellow attendees were patient to a fault, answering my many naïve questions. I realized, despite my lack of experience, that the conversations happening around research ethics were ones for which I felt some inclination and aptitude. I sensed from the outset that I had found a collegial “home,” And so, I joined PRIM&R, on the spot, on my own dime.
I also realized that I had been moving in and out of conversations and situations that involved both clinical and research ethics for some time: I’d already served on committees for my denomination that examined hot-button medical issues, but my connections to research and research ethics were even more personal.
Which leads me to Fun Fact #2: I myself am the subject of incidental findings during a research study and those findings changed my life forever…or at least altered its course a good bit. In 1992, I volunteered for an EPA study that sought to examine what effect air pollution had on folks who were active outdoors. As an avid cyclist, I fit the bill perfectly. The study protocol included bronchoscopies of all participants, a procedure that, then as now, is not particularly risky. However, it was when the flexible tube and fiber optic line made its way to the upper lobe of my left lung that things went a bit sideways.
As the line went past, the research doctor uttered a curious “huh.” He drew the line up, then paused again. He stared at the screens, then excused himself, saying he wanted to get some other doctors to give their perspectives on what he was seeing. Unable to speak, prone, I looked around to get some sense of what was going on. I looked at the screens, but with my untrained eyes, all I could see was “lung.”
When the additional doctors arrived, they crowded close in beside me, they too uttered cryptic “huh”s and “hmm”s. Soon, though, they showed me the little lump they were focused on. Very reactive, it became inflamed as the bronchoscopy line went past. They told me they weren’t equipped to biopsy, but they performed a simple brush test. Not surprisingly, this screened me out of the study, but the staff was kind. The doctors explained they weren’t sure what it was, but suggested other doctors I might consult. They also gave me their information so that I could ask any questions I might have.
Fast forward several years, and that little, very reactive lump became a 3.5 centimeter carcinoid tumor that was successfully removed in 2005. In the interim, my intermittent but worsening breathing problems were attributed to everything from “vog”—the glassy, particulate-laden air pollution common to the big island of Hawai’i where I lived for a year—to the belief that I had the bronchial equivalent of “fair Irish skin.” It was not until much later that I learned the lead doctor on the study had sent a letter suggesting that little lump might well be the beginnings of a carcinoid tumor—but since I was in my nomadic early 20s during the study period, I’d already moved from the address to which he sent it, and I never received it. (I have since made contact with this doctor, and his kindness cannot be overemphasized).
So this brings us to Fun Fact #3: I attend PRIM&R’s Advancing Ethical Research Conferences, because I’m invested—bodily and professionally—in the issues at hand. I look forward, as I always do, to seeing the friends I miss throughout the year, and to the opportunities to learn with, and from, them. I look forward to the book group, always a favorite (have you ordered your copy of The Malaria Project yet?), and to having conversations around a lunch table that often spill over to dinner in the evening. I can’t wait to get the day started with early morning “Stafford runs,” and head energized into the events of the day. Most of all, though, I’ll just be glad to spend a few days in this eclectic, collegial, “home.” And that’s a fact.
Learn more about our AER15 Blog Squad members here.
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.