The ethical conduct of research relies not simply on the detail of a particular study and the way in which it is carried out, but critically on broader structural issues of power and influence that shape the whole research endeavour – from the inception of research to the communication and implementation of any post-research findings. The question of who is ‘at the table’ when significant decisions are made, and the relative influence of those voices, arises throughout the research process, and in the context of many different relationships. These issues arise, for example, in the context of scientific leadership; in the role and influence of policy-makers and funders; in engagement with affected communities and community structures; and in interactions between research ethics committees in different countries.
The importance of research priorities being shaped by domestic policy is widely recognised, as is active engagement with communities from whom participants may be drawn. However, this creates particular challenges in a rapidly unfolding emergency, at the level of both professional and community relationships. Moreover, who ‘represents’ a particular community may be unclear. There may be multiple communities involved at a local level, with different leadership structures, perspectives and values. Because of regional or other differences, national governments may not be perceived as speaking for particular populations. Indeed, the nature of the emergency may lead to ‘communities’ being artificially created, for example through displacement.
3. Please provide examples of how, despite the urgency and pressure of other aspects of immediate humanitarian response, national governments, local researchers, and affected populations have genuinely been ‘at the table’ in setting research priorities in a global health emergency.
4. Please comment on what you believe are the essential aspects of community engagement in an emergency, their ethical justification, and how these can they be achieved.
5. Are there any circumstances in which research might be so important, and time so short, that this could outweigh the need for local voices to be heard?