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]
[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]
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.