Reflecting on the Roles of Community Members in Research
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![“The regs say: [we’re ] members whose “primary concerns are in non-
scientific areas,” who are “not otherwise affiliated with the institution,” and who
have a “cultural background and sensitivity to community attitudes . . . Some IRBs (Canada
in particular) even have boards where UA/NS (unaffiliated/non-scientists) constitute 25% of
the [board], and define community members as “people among whom risks are shared.”
Should there be specific types of community members present when a specific type of
“How diverse is your board? Do the community
members typically represent the minority as well as the
community?”
“I read [studies] with a viewpoint that I’m
representing the layperson. See if they can
understand it.”
“I was told in one case that they were not going to ask that question
(regarding racial disparities). In another case, I was told “well, this
is how we have always done things.””
“I think that’s what my role
is. I’m standing in for the
subject.”](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
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Reflecting on the Roles of Community Members in Research
- 1. Personal Reflections on the Roles and Responsibilities of Community/Non-Scientist/Unaffiliated Members Dahron Johnson AER 2014; Baltimore, MD
- 2. “The regs say: [we’re ] members whose “primary concerns are in non- scientific areas,” who are “not otherwise affiliated with the institution,” and who have a “cultural background and sensitivity to community attitudes . . . Some IRBs (Canada in particular) even have boards where UA/NS (unaffiliated/non-scientists) constitute 25% of the [board], and define community members as “people among whom risks are shared.” Should there be specific types of community members present when a specific type of “How diverse is your board? Do the community members typically represent the minority as well as the community?” “I read [studies] with a viewpoint that I’m representing the layperson. See if they can understand it.” “I was told in one case that they were not going to ask that question (regarding racial disparities). In another case, I was told “well, this is how we have always done things.”” “I think that’s what my role is. I’m standing in for the subject.”
- 3. --THE “COMMUNITY MEMBER” ROLE: A Positive “I Am!” instead of an “I’m not.” “If you don’t stand for something, you’ll fall for anything.” An Irruption—”bursting in”—of Outside Voices to help stem the tide of previous problems. The “Hero’s” Role: Carries responsibility to engage with, listen to one’s various communities. Establishing our Warrant: How Can
- 4. Efficiency is Another Word for . . . Ethics After Babel: Jeffrey Stout “”None make the temptations of moral reflection in our age more strongly felt [than ‘the desires and disappointments of Babel’]: the comforts of false unity and transcendence; the urge to lose oneself in playful aestheticism or the rigor of professional technique; the wishful thinking of utopian proposals and wistful thoughts of days gone by.” “Modern technology has become a total phenomenon for civilization, the defining force of a new social order in which efficiency is no longer an option but a necessity imposed on all human activity.” Jacques Ellul
Editor's Notes
- Good afternoon! (Pause/Response) Thank you, once again, Dr. Rose, for that kind introduction. I certainly plan to do all that I can to live up to such generous words. And absolutely, (turning to attendees), thank you to you all from both Dr. Rose and me in choosing this session. We hope that it fosters continued conversation, and inspires critical thinking and imagining, about the way each of you –as community member, or as IRB administrator or board member, or as a researcher, or any other type of participant in the research review process—the ways each of you contributes your voice and abilities to the important work of assuring and promoting ethical research. (CLICK) Now, I must admit that whatever gifts I have, they do not lie in knowing the nuances of policy or federal code, or the labyrinthine mysteries—the arcana—of regulation. Every conversation I have with Dr. Rose reminds me, that, even after five long years, I am but a neophyte in the ways of the IRB. So, if you’ll allow me, I will defer to her knowledge and experience, so that she might address—along with other important matters—some of those specifics. As for me, I simply appreciate your kindness in allowing me to provide some personal perspective on the way I approach my role as a community member on the IRB. Now, I realize that already I’ve laid some of my cards on the table by defining myself by the “community member” role. Some of you may prefer the way “unaffiliated” works to set you apart from institutional interests; or how “non-scientist” allows others to understand that the perspective you bring to bear comes from a different vantage point. And as our colleague Troy Brinkman, who serves with me as a co-facilitator of the non-scientist affinity group this year, has pointed out, {USE SCARE QUOTES} “community member” is not even “in the regulations.” I appreciate those perspectives, and concede that point. However, {CLICK} I continue to believe that approaching my role as a “community member” serves as a valuable reminder that how we conceive ethical action—how we evaluate ethical research—is borne from a variety of voices, differing and different. In so doing, I believe taking on that label, taking up this role as “community member,” works to acknowledge not any one given klatch or clan, but the variety of communities out of which we as a group, and even I as an individual, think, speak, act. Of course then, the IRB, in turn, is a community of those communities—and we should not be surprised, indeed should welcome, the sometimes harmonious, sometimes dischordant, sometime absolutely cacophonous!—process by which we come to understand and define what is ethical—or in the specifics of the IRB arena, what constitutes ethical reasearch.
- I will return to give better definition and rationale for this emphasis—for this lifting up of a range of voices—in just a moment. However, given the importance I place in all this sonorous activity, it only makes sense to hear from a few of the voices in the mix. I have corresponded with a few other community members, and asked them what questions, thoughts, they have about their role, about the experiences they’ve had. They come from folks who’ve worked for commercial and non-profit IRBs, medical and SBER; from members who’ve left an IRB in frustration as well as from those frustrated-in-place (as it were). I also have included quotes from the interviews Charles Lidz and his colleagues performed as part of the work for their 2012 “Participation of Community Members on Medical IRBs” study. Now, as you came in, I handed some of you cards with numbered questions and reflections on them. If possible, I’d like the person who has the card marked “1” to read that now (and these will also come up on screen if it’s hard to hear): {CLICK AS QUESTION IS READ}: “How diverse is your board? Do the community members typically represent the minority as well as the community?” . . . And 2? {CLICK AS QUESTION IS READ} “I was told in one case that they were not going to ask that question (regarding . . . racial disparities). In another case, I was told “well, this is how we have always done things.”” 3? {CLICK AS QUESTION IS READ} “I read [studies] with a viewpoint that I’m representing the layperson. See if they can understand it.” 4? {CLICK AS QUESTION IS READ} “I think that’s what my role is. I’m standing in for the subject.” And 5? {CLICK AS QUESTION IS READ} “The regs say: [we’re ] members whose “primary concerns are in non-scientific areas,” who are “not otherwise affiliated with the institution,” and who have a “cultural background and sensitivity to community attitudes . . . Some IRBs (Canada in particular) even have boards where UA/NS (unaffiliated/non-scientists) constitute 25% of the [board], and define community members as “people among whom risks are shared.” Should there be specific types of community members present when a specific type of protocol is considered?” Now, if you guessed that my answer to this last one is “the more, the merrier,” you’re just about right. Looking broadly at these questions, though, it is hard not to miss the desire to feel validated in one’s efforts, and equally, to not feel isolated in the process of doing so. Certainly, one can read articles, learn strategies, know the regs regarding one’s role backwards and forward . . . And yet, doing so only addresses one person’s difficulties with one IRB’s instantiation of the problem. I believe my perspective here dovetails neatly Dr. Rose’s as well. I’ll continue to push, though, and say that there are still deeper—really, foundationally embedded—issues at work here. Look at that last quote again: this person obviously knows the regs well, has done the research, but still the struggle to legitimate the role—and more importantly, their voice—comes through. I mean, they’re so desperate for validation they looked to Canada for an example. {I jest, I jest; I’m an adopted child from the Buffalo area—I could very well be Canadian myself!)
- Now, as is perhaps obvious, these various thoughts, and questions, about conception and confidence in role go directly to one’s conception and confidence in voice: that is, who we picture ourselves as, opens up—or delimits—what we feel liberty to speak. {CLICK} For me, personally, this is why the role—the construct—of “community member” recommends itself so strongly. First and foremost, however one lives into it, “community member” defines itself by what it is, rather than by what it is not: {CLICK} “I AM!”—not: I’m not.” I’d rather not be defined by negation— as is the case with the term “non-scientist”—nor do I want to be understood by some lack: the disconnection of the “unaffiliated.” Now, granted, there may be some days, sitting around the IRB table, we might feel like {VOICE DRIFITING OFF} we’re just aimlessly floating off who-knows-where, not related to anything else. But we’re not actually untethered. So, for the record, I’ll note that we are all always already affiliated. Further, the image of some type of impervious, statue-like, examiner—Rodin’s Thinker {CLICK} IRB style—this model of how one ought to act in relation to the world around us—or towards the research we review--is an old rationalist trope that might get us into exactly the type of trouble we were hoping to avoid in the first place. Or, as the variously-attributed old saying goes: {CLICK} “If you don’t stand for something, you’ll fall for anything.” {MALCOM X INCONGRUITY ASIDE} It’s true that for all the appreciations and concessions I nodded to just a couple of slides ago regarding labels other than “community member,” these last comments may seem far less accepting. However, to take a step back and look historically at the introduction and development of this place at the IRB table is to hopefully see the reason for concern. In a useful memo written by one of last year’s non-scientist affinity group leaders, we have a chart of the evolution of the role—and what we see there is a slow {CLICK} move from a group of one’s research colleagues, to a slightly broader group that included one’s other (hopefully “disinterested”) peers. From that, we moved to a group made up of a variety of professionals, and then finally, finally, to some notion of community members. Such a history demonstrates that, however one feels about this turn of events, we are the positive irruption—{CLICK} irruption with an “i”—the positive bursting in of outside voices. We are the incursion of difference when all the homogeneous variations prior to, proved insufficient to adequately stem the tide of institutional pressures; or cronyism; or even just some mild, collegial, looking-the-other-way. With this irruptive evolution {POINT TO CHART}, I admit that I wax towards the heroic. It was exactly on this point I focused last year. Suffice it for now, though, to say that I believe I, we, serve on the IRB to act as a positive {POINT TO “I AM” STATEMENT} force. Further, I do not shy away from, but embrace, the fact that such an envisioning of the role carries with it responsibilities. For one, it carries the responsibility to continue to to represent this alterity—this otherness. It also, though, comes with an ongoing responsibility to engage with and listen to one’s various communities—even, and perhaps even especially, as this might include one’s own internal dialogues. To the outside world, though, this does not need to be anything formal. Perhaps I’m an ethics geek, but I’ve ended up having many fairly substantial conversations with folks about their sense of the research landscape—while I’m working 20 hours a week at a bike shop. {CLICK} I have to include one other way of considering this point. {CLICK} In email conversation earlier this week with Laura Stark—author of the 2012 book, Behind Closed Doors: IRBs and the Making of Ethical Research, she raised an intriguing question about how those convened around the IRB table, and especially community members, create rationale for—justify—their comments during a given meeting. More precisely, Dr. Stark used the term “warrant”—wondering, that is, how one creates “warrant” for what is said. However, for community members, I’d note that we work to create warrant not just for our comments, but for ourselves. One need only look back at that history I just sketched out, to see that the justification for this role—our warrant to be included—was never a given, never a pro forma assumption. In the end, I simply don’t believe that taking up this role from a position of either disconnection or lack can resist the disregard historically baked-in to it. Now, I feel very supported by my particular IRB, but that doesn’t mean I ever lose the feeling that I’m the {GESTURE TO MYSELF} odd man out—that even when the role is needed to make quorum, that it doesn’t somehow still feel contingent. This is part of what I meant when I mentioned issues that are “foundationally embedded” into the role.
- Of course, I’m not the first to comment upon these “foundationally embedded” concerns that resist the inclusion of different voices, different perspectives. Indeed, they are so long-standing that I can hardly do them justice here. However, let me give just two brief examples of how the ways we understand the role of community member then also reflects—and has an impact upon—how we conceive and construct other arenas of ethical import. {CLICK} Attending the genetic bio-banking session yesterday, I was reminded of a phenomenon of which I’m sure we’re all becoming intimately familiar: the drive to funnel more and more applications, more research, through central and commercial IRBs. As I hear at home, I heard here: “this allows us to streamline our processes, makes sure everyone is consistent, and generally make things more efficient.” That “efficiency” fosters a desire to create consensus is a fairly explicit goal here, even lifted up as a laudable one. However, we should not neglect to notice that such a goal, per force, means a quieting of difference: no squeaky wheels, here, please! I would argue that the dynamic between central and local IRBs in these scenarios replicates the dynamic between community members and local IRBs that we’ve been discussing. Do we want local IRBs to continue to serve as a forum and voice for local, ethical, particularity—as was part of their original, justifying rationale? Or will it be okay for our IRBs to become simply “unaffiliated” reviewers--limited to determining whether something is or isn’t reasonable research? Maybe the latter really does safeguard all that we feel should be protected—maybe, but history doesn’t help make that case very well. {CLICK} Along these lines, I recently came across a quote from the French philosopher and theologian Jacques Ellul that names the impulse well. He stated: “modern technology has become a total phenomenon . . . the defining force of a new social order in which efficiency is no longer an option but a necessity imposed on all human activity.” Has anyone heard the phrase, “When the only tool you have is a hammer, then everything looks like a nail?” Such is the univocal, consensus-building desire for efficiency—all of which makes an old cycling t-shirt of mine {CLICK} take on a very different meaning. But the roots of this desire, present and past, this desire to quiet and constrain plurality—to limit the range of voices we allow at the table—whatever the altruistic or more grim reason, goes back even further than that. {CLICK} Building out from the rich metaphor of the Tower of Babel narrative—that grand moral story about a project undertaken with supposed unanimity and pursued with hubris, only to be punished by a disintergration into differing tongues—on this, philosopher Jeffrey Stout remarks in his fantastic work Ethics After Babel, that “None make the temptations of moral reflection in our age more strongly felt [than ‘the desires and disappointments of Babel’]: the comforts of false unity and transcendence; the urge to lose oneself in playful aestheticism or the rigor of professional technique. {PAUSE A BEAT, then: CLICK}
- While Stout may not say it, I will. I get more latitude on these things being a chaplain—and its not so often a philosopher gives folks like me such a ready invitation to play in familiar fields. There is a very real gift in the Babel story—one that we often mistake as a punishment. As we are all always already affiliated—to our various concerns and communities—so too are we then all always already a world of different tongues. This was as true before and during the construction of the Babel tower, as it was after. The change effected with the tower’s fall simply granted us the ability to more fully understand what was true already. Gathered—in this room or at an IRB meeting or anywhere else, we represent a wide array of communities and their particular ways of knowing the world, their idiosyncratic (IRB, say what?) languages and vernaculars. And as individuals, travelling through and residing in many different figurative and literal communities, each of us then too also comes to represent a huge range of speaking about and understanding our worlds. {GESTURING TO LAPEL} I didn’t search out all these various little labels with no rhetorical purpose, after all! Thinking about these different voices, figuring out ways to coordinate our actions, so that we might navigate the world around us, has become a central part of my day-to-day existence. My son, a child on the autism spectrum and here examining this large globe in his favorite fez, has been non-verbal for most of his 8 years, only recently beginning to talk. Still, every day, I must work out with him, his different language, his different understanding of the world, and figure out how to take our best next steps: he would have embodied those differences regardless, but this particular difference of his has put a fine point on it. The importance of the community member is that it allows for a similar Babel realization: even as a community—this community--we do not speak with one voice; even as individuals, our self is made up of many selves. Yet still, we figure out ways to move ourselves forward—enriched by, not despite, our many voices, differing.