‘Research’, ‘healthcare’ and ‘public health interventions’ are often treated as quite separate activities, governed by distinct ethical and regulatory codes. Yet in practice, these boundary lines may be far from clear: interventions offered in the context of research may potentially have therapeutic effect and can be eagerly sought after for that reason; and the same personal data may be obtained from participants / the public for both research and public health purposes. Distinctions may also be hard to draw between health systems research and service evaluation or audit. There can be perverse incentives to classify such activities not as research, because of the way in which the ethical scrutiny of research is perceived as acting as a barrier.
In some cases, practitioners may be used to working across multiple roles: for example health professionals who regularly combine their clinical practice with a research role. In other cases, practitioners may be very comfortable in their own ‘silo’ and reluctant to engage with other areas of expertise and other academic and ethical approaches. Both circumstances create ethical challenges: in the first case ensuring that the demands of research do not detract from the needs of clinical care; and in the second in the obvious risks posed to collaborative working.
Such blurred boundaries, and associated ethical challenges, are particularly problematic in global health emergencies, where practitioners from many different disciplines, working for agencies with diverse approaches and aims, need to collaborate in very difficult circumstances (see also section 7). While the integral role of research both in achieving an effective response to an emergency and in learning for the future is increasingly recognised, there are serious practical challenges on the ground to such integration. These will often be exacerbated by shortages of personnel and other resources. In such circumstances, ethical guidance that distinguishes sharply between what is clinical care, public health, research, and evaluation may hinder, rather than support, effective co-working.
14. What, in your experience, are the main ethical challenges that arise as a result of uncertainties in the boundaries between treatment, research, evaluation, and public health? To what extent are these associated with logistical or resource constraints?
15. Is it possible to create a meaningful distinction between the collection of personal data for public health purposes, and for research purposes? What does this mean for consent and for data-sharing?
16. How could a more coherent approach to the complex relationships between research and other essential services in a global health emergency be developed, so that front line workers are supported by ethical guidance that reflects the realities they face?
17. In the alternative, do you think that there are ethical justifications for maintaining clear distinctions between the activities of ‘research’, ‘health care’ and ‘public health interventions’ in a global health emergency? If so, what are they?)