- Editor's Note:June 2020
2020 has been a whirlwind. Since my last Editor's Note, the KIEJ has issued a call for, collected, and published an online advance issue of papers addressing ethical issues raised by the COVID-19 pandemic (online version published on the KIEJ website; hardcopy double-issue coming this fall). Now for the summer issue, I return to our pipeline of non-COVID-related papers, and we have the pleasure of releasing the following diverse, fascinating collection of articles.
This issue's feature article is something truly different from so much of bioethics. It is simultaneously fairly modest in its argumentative aims while being truly controversial, but in the best sense. Let me unpack.
Lauren Taylor and Sadath Sayeed set out to evaluate the ethics of a study in Ghana called the Joining Forces Study. Well, that's sort of what they do. The authors certainly aren't going to offer a view on whether the study was permissible (which others have weighed in on), but instead they are going to ask the reader to really understand the context of the study—in all its richness and difficulty—and then make a broader set of ethical judgments (and perhaps withhold some of our too-easy, sometimes-vicious critiques).
This article is worth reading for many reasons. The Joining Forces Study is fascinating; the authors' long-running evaluation of the study is rich and detailed; the context is one that will be unfamiliar to many research ethicists; and as an added bonus, the writing is beautiful. But the content is quite disturbing. In short, researchers in Ghana partnered with a 'prayer camp,' which claims to treat psychiatric illness but through brutal, sometimes-torturous 'spiritual' therapy; this includes forced fasting, as well as being chained for significant periods of time. The researchers proposed and conducted a randomized clinical trial to determine whether adding psychiatric medication to the 'therapy' of the prayer camp would improve outcomes. When the researchers published their totally unsurprising findings that, of course, medication helped compared to the brutal norm, the condemnation of the researchers was swift and fierce: [End Page vii] upon publication, the paper was flanked with criticisms of the researchers' ethics, claiming that they had lent legitimacy to a practice that violates human rights. Taylor and Sayeed, however, want us to really understand the context of the camps and the researchers and to recognize that, within serious constraints, the researchers may have accomplished real, significant good by forming that partnership. On the surface level the debate, then, is a classic one between whether the researchers are obligated to keep their hands clean, or whether utilitarian justifications can ever do the work the researchers are asking of them.
As I previewed, though, Taylor and Sayeed do not make a first-order moral judgment about the study. Instead, they want to zoom out and criticize the system that puts researchers in that position. I'll close this brief overview with an excerpt from their powerful conclusion:
Many of us in the Global North are immediately primed from a great distance to judge a poor, undereducated, socially conditioned prayer camp staff member who chains mentally ill residents or damn by association Ghanaian researchers who seek realistic, tangibly available means of improving health for specific, identifiable lives. Yet many of us also feel quite comfortable accepting a grant to do our global health work from a white collared executive whose business seizes on market imperfections to profitably extract resources from the Global South, and by extension, contribute to the continued impoverishment of at least some of its population…
For an earnest Global South academic practitioner whose hands are most often tied, we suspect that most criticism originating from "concerned" observers and colleagues comfortably perched on their Global North precipices arrives with an unpleasant whiff of sanctimony.
In the second article of the issue, Steve Matthews claims to be primarily making a claim concerning how we ought to treat those with Alzheimer's Disease, but along the way he does much more. In this rich exploration, Matthews provides phenomenological insight into the experience of dementia, the neuroscientific reality of cognitive decline, a foray into the literature on...