Research in global health emergencies: ethical issues
Report
Published 28/01/2020
Call for evidence analysis
On 30 June 2018, the research in global health emergencies working group launched a call for evidence. We received 58 responses. The document below provides an analysis of responses, excluding two responses which were submitted without permission to publish or analyse.
Background paper
A background paper was written in November 2016 to provide an overview of key ethical and governance challenges associated with conducting research and innovation in the context of global health emergencies:
Conducting research in the context of global health emergencies: identifying key ethical and governance issues
Written by Dr Agomoni Ganguli Mitra, Research Associate (Liminal Spaces Project) and Teaching Fellow, Mason Institute, School of Law, University of Edinburgh and Dr Nayha Sethi, Research Fellow (Liminal Spaces Project) and Deputy Director, Mason Institute, School of Law, University of Edinburgh.
Evidence reviews
- After Hurricane Katrina: a review of community engagement activities and initiatives
- The humanitarian crisis and civil war in Syria: a review of community engagement activities and initiatives
- After the Indian Ocean tsunami: a review of community engagement activities and initiatives
- After the Great East Japan Earthquake: a review of community engagement activities and initiatives
Participants at the joint workshop (below), held in Dakar
Joint workshop: community engagement in and for ethical research in outbreaks of infectious diseases and other humanitarian crises
Dakar, Senegal | 17-18 March 2019
The workshop was a collaboration between four partners: the Nuffield Council on Bioethics; the African coaLition for Epidemic Research, Response and Training (ALERRT) consortium; the Institute for Health Research, Epidemiological Surveillance and Training (IRESSEF) in Dakar, Senegal; and the Wellcome Centre for Ethics and Humanities (WEH) at Oxford University.
The overall messages that emerged from the workshop are that that research will not be possible unless a trusting relationship between researchers and potential participants can be developed, and the intrinsic value of community engagement in the context of research lies in its contribution to supporting a mutually respectful partnership between researchers and communities. Accordingly, effective and respectful engagement starts from a recognition of the experiences of people affected by the emergency, and the history associated with those experiences, and it should actively involve affected populations from the beginning and throughout the course of the research endeavour, as a two-way process contributing to the design, conduct, and outcomes of research.
2016 workshop
9 December 2016
The Council hosted a workshop of invited guests to explore the ethical challenges for research and innovation that arise in the context of global health emergencies; to consider in the light of recent and ongoing work by a number of agencies what ‘ethical gaps’ still arose; and what further work (by itself or others) might be valuable.
It highlights the key challenges and what action might be needed in the following areas:
‘Research’ as an intrinsic element of emergency response
- Collaboration and engagement
- Priority setting and who decides
- How to conduct research: do the ‘usual rules’ apply?
The workshop was chaired by Jonathan Montgomery, Chair of the Nuffield Council on Bioethics, and of the Health Research Authority.