The Nuffield Council on Bioethics has established a working group to investigate the ethical issues arising in research in global health emergencies. Recent emergencies, in particular the 2014-16 Ebola epidemic in West Africa and the current outbreak in the Democratic Republic of the Congo, have highlighted the important role of health-related research in outbreak and humanitarian response. However, the current lack of consensus on what is ethically acceptable during emergencies has both impeded the progress of valuable research, and added to the risk that research might be carried out in unethical ways.
The aim of this project is to help develop a common understanding of what constitutes ethical research and research ethics in such circumstances, and, where appropriate, to make practical recommendations for change. It is concerned not only with the traditional ‘research ethics’ questions of study design, review, and recruitment, but also with the inherently ethical questions of imbalances of power and influence, and the duties and responsibilities of the many stakeholders concerned in funding, facilitating, reviewing, conducting, and reporting research. Those with an interest in this project thus include: potential research participants and their families; researchers and research institutions; healthcare practitioners, other humanitarian responders, and the agencies for whom they work; funders; editors and publishers; national and international policy makers; research ethics committees; regulatory agencies; and training institutions.
We are very much hoping for contributions to this call for evidence from a diverse range of respondents, drawing on their direct experience in emergency response and / or on academic work in this field. These will play an important part in influencing this project and its final recommendations. Please feel free to respond to as many, or as few, of the questions as you wish. Each section includes a brief explanatory section and several questions, with optional links to further commentary and references.