by Dahron Johnson
Dahron Johnson has worked as the Chaplain for HighPoint Hospice in Gallatin, TN, as well as serving two and a half years as an Association for Clinical Pastoral Education chaplain resident and intern at the Department of Veterans Affairs' Tennessee Valley Health System’s Nashville campus. He continues to serve at the latter as a community member on the IRB, and is involved with other area ethics roundtables.
A woman peers apprehensively out of a window of her home. She holds a phone to her ear as she tries to piece together information from the person on the other end of the line, and the confusing melee of events that just so happens to be unfolding in front of her house—a setting that otherwise doesn’t host much outside the routine of daily life. She’s been told by someone of authority that her options are limited (stay inside; leave the area entirely). Maybe she’s also listening to a police scanner (or, as it so happens, watching it). Regardless, or more likely exactly because of this variety of informational sources, a cohesive, full view of events and options is hard to come by. Even as separated as we are by distance and time from that moment, from her place, it is hard not to also feel anxiety well up and turn our stomachs— what is going on? What will happen next?
I relate this scene for a number of reasons: First and foremost, with PRIM&R headquartered in Boston, it feels appropriate to again share our sympathy and solidarity with those affected by last month’s bombings, and all that has followed and continues to unfold in their aftermath. Second, when asked if I might write a post for Ampersand well before these events unfolded, my initial instinct was to share some of my observations from the discussions surrounding vulnerability that took place at the 2012 Advancing Ethical Research Conference this past December, a topic that I had recently presented on. But, in sitting down to write, I felt outpaced by the events in Boston. The vulnerability people felt in the moment the bombs went off spoke far more than I ever could.
In particular, it raises questions about a distinction made at the 2012 AER Conference, one I admit that I latched onto myself: the distinction between “situational” and “decisional” vulnerability. In a nutshell, situational vulnerability is vulnerability caused by circumstance, which does not impair decision-making. It implies a severely delimited field of options because of circumstances, but does not imply any impairment in the ability to make choices among those limited options. Decisional vulnerability, by contrast, refers to situations “when one is relatively or absolutely incapable of protecting their own interests” (Dr. Alan Wertheimer’s presentation “The Nexus of Vulnerability and the Minimization of Risk” is available through the AER Conference Passport). If one were to hold strictly to the above definitions in the wake of the events that unfolded recently in Boston, the relevant people’s vulnerabilities would appear to be primarily situational ones; these events, though in extremis, do not necessarily negate people’s ability to choose among a now-altered field of options.
I still consider the distinction between situational and decisional vulnerability to be important, since, quoting Dr. Wertheimer again, it helps to “guard against debasing the currency” of vulnerability qua vulnerability. And yet, a series of events such as those in Boston seems to me to collapse such a distinction.
Descriptions by people in the moment provide examples of how such situations can also create, to use the decisional vulnerability definition, relative (perhaps even absolute) incapabilities with regard to making decisions in one’s own interests. Such is the nature of piecemeal information, informational gatekeeping, and emotions, that it would seem difficult to argue that the decisions made in such moments are subject only to situational vulnerabilities as described. How fully capable is someone of protecting his or her own interests in the extremes of such events? Especially when events are so extreme? Or, put differently, to treat moments of crisis and distress—a bomb ripping through mid-morning revelry; a mother putting up a wall of faith between herself and her dying child; receiving an unexpected call informing you of your newly-diagnosed disease—as only situational “externalities” with which we must contend, does not account for the myriad ways such events can cause an inward change. Perhaps such changes are fleeting and relative, or perhaps they are chronic and create more permanent effects. In either case, it is not necessarily any more respectful or humane to assume a person’s ability to maintain whatever level of rational decision-making he or she was capable of prior to such moments.
Such considerations are at the crux of ethical research. A majority of the time, researchers and those who oversee research establish relationships with potential subjects just at that moment when their information is limited; when the ability to understand and contextualize the information available is likely diminished; and when the dynamics of power and authority are tilted severely away from them. While we want to hold on to the conception of the person as a capable actor with regard to his or her own interests, despite a field of winnowed options, that patient-participant (the phrase itself doing tidy semiotic work on the simultaneous roles) is also, at the same time, a person not fully capable of protecting his or her own interests. A person in such circumstances may pursue a fool’s errand, even as each decision along the way seems rational in and of itself. While we on the research side certainly cannot prevent such situations, we do have some ability—even obligation—to provide decisional support that recognizes and allows for the flux and ebb of a person’s decisional capabilities. That is, when considering whether a person is vulnerable either because of situational or decisional concerns, the answer is likely a simple, encompassing “yes.”
Let me end with two admissions: First, there is a bit of a strawman being swung at here. As described at the 2012 AER Conference, these two types vulnerability are not mutually exclusive (though I don’t believe I’ve overstated the desire to reassert the value of the term by separating out these varieties of vulnerability and treating them in turn as “scarce resources” to be used with deliberate thought and care). Second, people may very well figure out ways to negotiate their paths forward through the midst of more- and less- calamitous events. I agree fully that it is paternalistic at best, degrading at worst, to overassume and overascribe decisional impairment. However, I sense that recent events issue a caution to this corrective. Perhaps the best we can do—the best thing to do—is to figure out approaches through which we can keep ourselves attentive and responsible to how any given set of situations play out and affect not just those with whom we work, i.e., research subjects, but ourselves as well. In the wake of a tragedy the best first move is still to meet people where they are, and to figure out with them how to best move forward from there.
by Dahron Johnson