Friday, December 11, 2015

Research ethics during medical disruption

A couple years ago, I experienced first-hand the effects of political turmoil on research. My university was conducting epidemiological research involving sex workers in Antananarivo, Madagascar. Special clinics were being piloted for this stigmatized, hard-to-reach and vulnerable population. Then the political crisis of 2009 hit. Everything ground to a halt, including much of the activity in the hospitals where the research was taking place. The sudden upheaval in the routines of everyday life caused much confusion and disarray: what now?

A new publication in the Journal of Medical Ethics by House et. al. is therefore very welcome, because it covers some neglected ground. In the rare case that bioethicists discuss ethical challenges within politically unstable contexts, they tend to concentrate on the reliable delivery of health care. Instead, this article focuses on the conduct of health research when social life gets gnarly, and more specifically when medical services are disrupted, based on the authors' experiences in Kenya. The authors make a useful three-way distinction between the ethics of not starting research, stopping it once it has started, and keeping on going in the face of communal strife.

The authors argue that the ethics of not starting research, and continuing it once it has started, are different. If the political upheaval is so disruptive that ethical standards of research cannot be upheld, research should wait. But an ongoing study may involve serious commitments and expectations, a relationship of trust between researchers and communities, and research participants may benefit from research-related interventions. Stopping an ongoing study requires deliberation with the local community and a careful collaborative weighing of options and trade-offs.

One shortcoming of the discussion is its strong focus on clinical, biomedical research, where data collection is closely bound up with the provision of health care. Not all research one can imagine during a political crisis is like that. Anthropologists and political scientists -- who unlike physician-researchers do not have a role-related duty to care for patients -- may in fact jump at the chance to study what goes on during periods of political turmoil, and it is not clear that the biomedical framework of House et. al. captures the kinds of challenges they might have, or if their recommendations are applicable to them.  

Connecting the recent Ebola crisis to this article reveals a certain tension. According to this House et. al., would research during the highly disruptive Ebola crisis be permissible or not? The answer seems to be: yes and no. At some points, House et. al. rule such research out as unethical: "While research has the potential to benefit the health of populations, the risks overall are too high to start research during medical care disruption. The prudent course is to wait until after resolution of these episodes when ethical standards can be met, the safety of patients and research subjects assured, and the likelihood of completing a study is maximized." However, the authors later seem to build in a loophole: "... if the aims of the study are of particular importance during times of medical care disruption such as studies that address how to optimise healthcare during times of disruption, it may shift the balance of decision-making in favour of starting or continuing research." That would, under a charitable interpretation, rule in favor of research-during-Ebola-like-outbreak.

We seem to be still in two minds: do we categorically state that conditions during political upheaval simply make responsible conduct of research impossible, or do we permit research that might be useful and could not be conducted other than in those non-ideal conditions? The House et. al. article may not answer this question, but it has helpfully opened lines of inquiry into ethical questions that arise all to often in research in developing countries.    

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