Research in emergency settings is increasingly, and perhaps necessarily, collaborative and international: its success depends upon the establishment of collaborative partnerships between institutions and individuals who may have very different interests, goals, and priorities. In addition to such scientific collaboration between researchers from different institutions and countries, cooperation is also essential between those concerned with research and the many other actors in a global health emergency, such as: national and local governmental authorities and service providers; international humanitarian response organisations; intergovernmental organisations; the private sector; and the military.
Such collaboration clearly brings with it considerable practical and logistical challenges. It may also be ethically challenging, particularly in terms of how decisions made by those remote from the emergency, such as funders from high income countries, or pharmaceutical companies and their insurers, may fail to take account of realities on the ground (see also section 2 and section 3). The combination of complex relationships between external stakeholders, and the remoteness of key decision-makers, may also add to the risk that local voices and local needs are not given proper attention. Military involvement may provide important logistical support both for those providing humanitarian aid and those engaged in research. However, such collaboration with the military may bring with it difficult issues for researchers in terms of how they are perceived by affected communities; in the extent to which potential participants are able to make free choices; and even in accusations of complicity in others’ coercive behaviour.
The many organisations involved in response efforts may also lead to confusion and lack of accountability on the ground (see also section 6). Lack of clarity over the respective responsibilities of different stakeholders can lead to important interests being overlooked – in particular with respect to where responsibility lies for ensuring that local communities have fair access to any benefits of research after the emergency. Recent amendments of the Declaration of Helsinki, for example, have highlighted the importance of access to the benefits of research on the part of those communities who have contributed to that research – and the need to recognise that responsibility for ensuring such access cannot fall on researchers and research institutions alone.
Even in non-emergency settings, ensuring genuinely fair collaborations between researchers in low and high income environments may not be straightforward; and in an emergency, the challenge of ensuring local researchers are fairly involved in setting research agendas, in the process of the research itself, and in sharing its benefits, may be exacerbated. Finding effective and ethical ways of sharing data has been identified as being of particular concern: both in terms of ensuring maximum benefit for local populations at the time (through rapid data sharing to promote effective response); and in terms of fair access to data, and to associated academic recognition and authorship, by local researchers in the future. Further challenges arise in developing an ethical basis for sharing and prioritising the use of biological samples.
22. Can you provide examples of where collaboration has worked well in enabling valuable research to take place in global health emergencies? What were the key success factors?
23. Can you give any practical examples of ways in which ethical concerns have impeded successful collaboration in research? What would have helped resolve them?
24. Can there be said to be an ethical obligation to work collaboratively rather than competitively in the context of global health emergencies? What might such an obligation entail and what are its limits?
25. What are the obligations of funders to promote collaboration in a global health emergency?
26. What are the key requirements for good ethical practice in sharing (a) data and (b) samples in a global health emergency?