Friday, October 04, 2019

Undertaking ethical psychiatric research in the global south’s prayer camps – is that even possible?


Psychiatrists associated with elite institutions in the global north teamed up with counterparts in Ghana with a view to determining what impact the use of gold standard of care drugs plus ‘faith healing’ protocols would have vs ‘faith healing’ only. The venue of their research was an evangelical prayer camp where the ‘faith healing’ protocol consisted in keeping many psychiatric patients in chains, making them pray and making them fast. [i]

[This man lived in a Prayer Camp – he is drinking from a dirty container which staff put water in for him to drink. He slept, ate, and defecated beside the tree where he was chained ((c) 2012 Nick Loomis/Human Rights Watch] 
Comprehensive Mental Health Bill Passed in Ghana has yet ... 
The randomised trial discovered that those patients who were subjected to mainstream drugs did better than those who received only ‘faith healing’. The results, ultimately, were not overwhelmingly positive for patients in either group, which may have had to do with the short duration of the trial and/or the lack of efficacy of some of the mainstream drugs used. There were some improvements in the group provided with drugs, but apparently that had no impact on the amount of time they spent chained to the floor in said ‘faith healing’ facility. 

Let me say at the outset that I do think the researchers went into this research project with the best of intentions, likely hoping they would be able to show that more patients would improve faster if they received mainstream psychiatric drugs when compared to ‘faith healing’ only. In turn that should have led to the unchaining of more such patients than if they were subjected to ‘faith healing’ only. It should have also impacted positively on what is offered to patients like them, going forward. They were clearly aware of the problems to do with undertaking a clinical research project ethically under the circumstances, ie psychiatric patients chained to the floor in a ‘faith healing’ facility. The objective of this Editorial is not to castigate them as irresponsible researchers exploiting a small group of chained-up psychiatric patients in Ghana.

Several ethical issues arose, based on their own reporting of their trial method and the difficult circumstances under which they proceeded with their trial. They claimed essentially that the trial participants were volunteers who had entered the prayer camp voluntarily and who had given voluntary first-person informed consent to trial participation.  A neutral observer can’t help but wonder, to what extent a psychiatric patient chained to the floor is truly able to give voluntary consent to anything. It turns out, by the researchers own (honest) reporting, there were some patients who were apparently unable to respond to their questions. Clearly those patients then were also unable to consent to trial participation, and yet, some of them were apparently enrolled regardless. One has reason to doubt that they entered the facility voluntarily. 

Given that a significant number of trial participants were reportedly illiterate, the information was read to them, and their consent (bar that of those deemed unable to provide first person informed consent) was then taken to be sufficiently informed. Apparently, nobody validated whether those patients had a reasonable understanding of the trial method and of their options vis a vis their participation. Apparently, when family ‘consent’ (aka authorisation) was sought this occurred often by phone. No paperwork existed that would have validated that authorisation. No record exists to evaluate the interactions between the researchers or their intermediaries and the people on the other end of the phone line, people they took to be family members. 

Of course, another issue is the existence of, effectively, a placebo arm (ie the ‘faith healing’ arm) when a gold standard of clinical care was provided as part of the trial (ie the active agent in the other arm). These issues have been litigated elsewhere, so I will not repeat those arguments on this occasion.

When I read about this trial I couldn’t help but wonder whether ethical research is possible under circumstances this academic situated in the global north considers barbaric. On the one hand, it’s a fact that in the global south many such prayer camp equivalents exist, and the care provided to – often impoverished – psychiatric patients is indefensible on professional grounds, and yet, that is also all there is. 

Anybody concerned about the well-being of psychiatric patients finding themselves in such facilities, voluntarily or by coercion, should be supportive of research aimed at improving their lot. And yet, there are obvious questions about the how-to in terms of how this research team went about recruiting trial participants. I have flagged some of those questions. The broader question is though, whether ethical research is possible in such contexts at all.

UDO SCHUKLENK

[This is a draft version of an Editorial that is going to be published in Developing World Bioethics 2019; 19(4)]

[i] Ofori-Atta, A, Attafuah, J, Jack, H, Baning, F, and R Rosenheck. 2018. Joining psychiatric care and faith healing in a prayer camp in Ghana: randomised trial. British Journal of Psychiatry 212: 34-41.

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