At the end of the day—or at least the end of this day, one spent considering contemporary issues in biobanking—I can’t help but ask. Let me give some perspective, though, on how I got here.
On one side, there is a concern about subjecting others (subjecting ourselves?) to some less or more tolerable “regime of governance” in the biobanking process. Those regimes, though, take on greater and greater roles as subject consents become more and more broad: even if donors to a biobank were to give a universal consent, someone—or some governance body—will still have to give a specific “yes” to every research project that comes a-knocking. One of the day’s presenters/moderators, Marianna Bledsoe, summarized the issue well when she said: “because biobanks must make decisions about future use of specimens, they act as surrogates for participant decision-making through [their] governance practices.”
Now, I might dislike regimes as much as the next person, but here’s their utility: we don’t know what we don’t know, nor can we predict the future of scientific design, so it is useful and necessary to have an entity working to apply or interpret our consent to such activities on our behalf. True, maybe these decisions won’t always be fully our own, allowing a type of “consent creep” over time. Even if well-intentioned, that governance body may have a different interpretation of just what our original “yes” gave consent to. And of course, the third-party requestor of our specimen/data will have a different perception of our original “yes” yet again.
A concern about just this type of creep prompts a response in the other direction. Biobanks that decide they have no interest in being part of such regimes work to make themselves as neutral—as passive—as possible in the transactional process between original donors (and/or their now abstracted specimen/data) and third-party research. The key word here is transactional, for it signals a shift in ethic. For example, a biobank concerned about having their repository used as much as possible will look to find ways to maximize the distribution of their collection: banking without utilization is itself ethically and financially questionable.
But, per force, such biobanks will then also want to minimize the number of samples—the number of abstracted persons—for which they have responsibility: the transactional ethos determines the ethic. And don’t expect some type of return of results or incidental findings from such a structure. Such decisions are the very spurview of the active/surrogate governance regime model from which they wanted to distance themselves in the first place. This isn’t their model, after all; Craigslist is—lots of eyeballs, and lots of users, but as little interaction as possible among the various parties that use the service. Or maybe it’s more like Airbnb, which describes itself as a “trusted community marketplace” providing a “platform that connects hosts who have accommodations to rent with guests seeking to rent such accommodations.” Change the appropriate terms and mutatis mutandis, you have something very much like a transactionally minded biobank.
Of course, as a recent article on the ethical obligations companies like AirBnb and other “sharing economy” companies have with regard to matters like basic safety noted, the platforms offered by such services “are not neutral pieces of technology”—rather, “they are embedded with the values of the marketplace.” The ambiguity created by this disjunction, in and of itself, creates a risk. Donors and third-party researchers are led to believe—the biobank itself is led to believe—that the bank is not driven by any one set of values, even though it invariably is: altruistic non-profit biobanks can mirror market values as well as anything else. Is the next step for biobanks simply to make themselves an app, pinpointing donors, Uber-like, and matching them up with any roving researchers in the area—off-loading as much of the risk and decision-making responsibility onto them as possible? All in the service of not becoming another “regime?”
Has it really come to this?
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.