Research in global health emergencies: ethical issues
Whose voices should be heard? – An inclusive approach to influencing research
See Chapter 5 of the full report
Those planning to undertake research in an emergency need to engage seriously and respectfully with those whose interests are fundamentally affected by the emergency. These include:
- national governments and research institutions;
- local health services, voluntary organisations, and research institutions in the affected area; and
- members of affected communities.
Communities themselves are complex and diverse. It is essential for researchers to identify those with informal influence within the many different subgroups that make up a community, as well as those with more formal leadership roles.
Finding who can speak for, or facilitate access to, different parts of a community
Examples frequently cited in responses to our inquiry include:
- women’s associations;
- youth groups;
- church communities;
- traditional healers and birth attendants; and
- associations associated with people’s jobs, such as market traders or bicycle couriers / chauffeurs.
Influencing decisions about prioritisation and funding
Action is needed first to create a more collaborative approach between funders, and then to ensure that a wider range of voices is heard in determining the kind of research that should get funded.
• Research funders, relevant governments, national research institutions, and UN bodies should collaborate at the start of an emergency, to agree research priorities.
• Funders should encourage and incentivise researchers to include affected communities directly in grant applications – for example through small flexible grants for rapid scoping work.
Influencing how research is conducted on the ground
The development of trustworthy relationships is at the heart of meaningful and respectful engagement between researchers and diverse parts of affected communities. At its best, engagement takes the form of ongoing dialogue between community members and researchers throughout the research process, contributing to the design of the study, the way it is carried out, and the way the results are used.
- Developing community engagement networks in advance to foster such relationships is an important part of emergency preparedness – for example as part of regional research initiatives or community health structures. National governments should make systems of engagement a normal part of local health systems to ensure sustainability.
- In the absence of such preparedness, during an emergency, a pragmatic approach would include scope for learning and adapting in response to feedback as the research progresses. The values of equal respect and fairness, alongside the importance of helping reduce suffering through the research, should help guide consideration as to how much ‘adaptation’ of ideal processes is acceptable.
Research funders should require inclusive community engagement plans in funding proposals, and ensure they are properly funded.