The Nuffield Council on Bioethics is embarking on a major new inquiry to explore how research may be conducted ethically in the context of global health emergencies.
The Nuffield Council on Bioethics is an independent body funded by the Nuffield Foundation, the Medical Research Council, and Wellcome. The project, informed by a Council-run workshop held in December 2016, will take into account the diverse forms that such emergencies can take – for example an infectious disease outbreak, conflict, or natural disaster – as well as the diversity of health-related research involved and some of its associated challenges – including data-sharing and the implications of developments in genomics.
Such health emergencies may be ‘global’ in the sense that their effects extend beyond national boundaries, or that the response required is global in nature, or both.
Chaired by Professor Michael Parker
The project’s working group will be chaired by Professor Michael Parker, Director of the Wellcome Centre for Ethics and Humanities, and the Ethox Centre, at the University of Oxford. He said: “I am delighted to chair this important project. Recent global health emergencies, notably the Ebola and Zika outbreaks, have highlighted how uncertainties about what is ethically acceptable during emergencies can impede progress of potentially valuable research, or alternatively contribute to the risks of unethical practice passing undetected. Such a situation can mean that frontline workers are left to make their own decisions, unsupported, about what is ethically acceptable, often in very difficult circumstances.
“Although progress has been made in some areas, there is still an urgent need for comprehensive ethical analysis to support an approach to future research that both recognises the complex relationships between research and other essential services in global health emergencies, and supports cooperation between interested parties.”
Hugh Whittall, Director of the Council, said: “We believe that more work is needed to work out what, if anything, is morally different about an emergency, and how that affects what research can be conducted, and in what ways. This project could play a valuable role in achieving greater clarity as to what constitutes ethical research conduct in global health emergencies.”
Working group to have a global perspective
The Council will be seeking to appoint a number of members to the working group from outside Europe to ensure it has a global perspective, as it did for its 2002 project on Healthcare-related research in developing countries.
In the context of research in infectious disease outbreaks and in response to other emergencies, the project will explore key questions, including:
- Whether there is anything morally distinct about an ‘emergency’ that could justify different ethical requirements for research
- The extent to which the research, care, and public health elements of emergency responses – each of which have distinct ethical and regulatory approaches – may intersect and overlap, demanding a more holistic ethical framework
- Ongoing uncertainty over the roles and responsibilities of major stakeholders in resolving many of these ethical challenges on the ground.