Thursday, October 31, 2019

Nature Author's Oddball Piece on Bioethics

The journal Nature has published a lengthy Commentary piece by a UK based sociologist on Bioethics (the field, not the journal). It's part of a series of papers marking the journal's 150th anniversary. 

Sarah Franklin, the Commentary's author, apparently undertakes in her actual job research on reproductive sociology, as opposed to bioethics.Her Commentary describes aptly the rise of Bioethics as a consequence of funding generously offered to ELSI academics during the heydays of the Human Genome Project. Her take on bioethics is that we should do away with ethics in the context of biomedicine and replace it with freewheeling societal engagement, no doubt facilitated and led by sociologists like herself. She generally thinks that Bioethics began to wither once the HGP funding fell by the wayside. Franklin also thinks that 

'The stereotype of bureaucratic, box-ticking ethical compliance is no longer fit for purpose in a world of CRISPR twins, synthetic neurons and self-driving cars. Bioethics evolves, as does any other branch of knowledge. The post-millennial trend has been to become more global, less canonical and more reflexive. The field no longer relies on philosophically derived mandates codified into textbook formulas. Instead, it functions as a dashboard of pragmatic instruments, and is less expert-driven, more interdisciplinary, less multipurpose and more bespoke. In the wake of the ‘turn to dialogue’ in science, bioethics often looks more like public engagement — and vice versa.'
This truly amounts to a lovely mix of half-truths and nonsense. What she describes as box-ticking ethical compliance still has its place, of course, in the context of, for instance research clinical trials involving human participants (just check the binding national regulatory framework in your country for that). These documents were written by multidisciplinary teams of ethicists, lawyers, clinicians and patient representatives. Quelle surprise. Bioethicists offered here ethical analysis, input, background papers etc, but they never were the ones who single-handedly could have taken credit for such documents. In that sense, the field never relied on philosophically derived mandates codified into textbook format. I wonder whether Franklin ever had a look into bioethics textbooks. I rather doubt it. 
Franklin is mistaken when she claims that the field is less expert driven. Of course it is expert and expertise driven, even when it comes to AI in medicine (as I write this, significant funding for research precisely in the area of ethics and AI in medicine is made available in pretty much every Western country that I can think of!). It has always been a multidisciplinary field, but a field of multidisciplinary expertise nonetheless. 
An entirely different question, that she conflates with bioethical analysis, is how biopolicy ought to be developed in a democratic society. Bioethicists have never claimed that they ought to have the last word on it. That's not how democracy works. Invariably, on controversial subjects, there would be public consultations by policy makers, and in addition to expert analysis by bioethicists, and others, public opinions would be sought and engaged before eventually a parliament would take a vote on a controversial issue. Incidentally, that is even true with regard to court judgments. The Canadian Supreme Court in its decision on assisted dying took into account both ethical and legal arguments as well as empirical information on Canadians' views on the subject. Again, quelle surprise
What is mostly off-base about Franklin's take on bioethics is that she sees apparently no room for ethical analysis and expertise on matters biopolicy when we could have the freewheeling societal dialogue instead that she prefers. Clearly there is no contradiction in having both. The former should hopefully fruitfully inform the latter. 
Unsurprisingly, conservative commentators like the US based creationist 'think tank' Discovery Institute's Wesley Smith claimed that Nature  declared 'Bioethics is Obsolete'. Of course, Nature didn't declare that. A sociologist with no apparent expertise in bioethical analysis declared that in a commentary in the journal. Franklin, of course, has a minor conflict of interest here, depending - as she does - on research funding opportunities also accessed by bioethicists. Wouldn't it be convenient if bioethicists would just step aside for 'one of the world's leading experts on the social aspects of reproductive and genetic technologies, IVF, cloning, embryo research, and stem cells', as she describes herself on her departmental website? Probably, but that's not how that works in the real world. 
I do think that the kind of research Franklin undertakes is valuable. What's odd is that she seems to believe that it is the only thing that there ought to be, certainly bioethics should get out of her way. Editing two mainstream journals in our field, I have little to go by other than article downloads. Readership for bioethics peer reviewed expert content has never been greater. Submissions of papers to the journals have never been higher. None of these are signs of a field in decay. 
Incidentally, a good way to compare the academic relevance and impact of a leading bioethicist vs Franklin is probably citations. So, I checked on google scholar how Sarah Franklin (Cambridge) fares compares to Julian Savulescu (Oxford). 
2017 - 593 ;  2018 - 668 ; 2019 - 503
2017 - 1695 ; 2018 - 2000 ; 2019 - 1750
Why am I thinking that there might just be a little life left in Bioethics?
The funniest thing about Franklin's attack on Bioethics, and Smith's full-throated support of her agenda, is that we see again feminism and conservative anti-choice activism finding common cause. It's not for the first time, it won't be the last time. Let's hope Franklin enjoys her new-found companions. 

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.


[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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