The call for action to research funders, governments, and others involved in health research systems for a more ethical and collaborative approach to conducting research during emergencies such as infectious disease outbreaks was issued today.
The latest novel coronavirus outbreak in Wuhan, China, illustrates how suddenly new threats can emerge, and the important role that research has to play in understanding the nature of the threat, and how to respond effectively.
The pressures and distressing circumstances of such emergency situations can lead to uncertainty about what is ethically acceptable with regards to conducting research, which may mean valuable research is impeded, or that unethical practices could creep in undetected.
Following a two-year inquiry, the Nuffield Council’s Call for Action highlights proposals including:
- More investment in community engagement so that local voices can be heard, and that everyone involved in research in global health emergencies is treated fairly and respectfully.
- Ensuring that, before proceeding with any research project, participants’ basic health needs are being addressed. Funders will need to work in partnerships with humanitarian organisations and health ministries to achieve this.
- Better support for emergency planning, to secure robust health and health research systems - given the vital importance of properly resourced preparedness between emergencies.
The call for action is supported by international research institutions and organisations including: International Rescue Committee, The African Academy of Sciences, Wellcome, Médecins Sans Frontières UK, London School of Hygiene & Tropical Medicine, Elrha - a global humanitarian research charity, Fundação Oswaldo Cruz (Fiocruz), and Geneva Centre for Education and Research in Humanitarian Action.
The full report makes 24 recommendations for changes to align the policies and practices of global health emergency research with three core values: fairness, equal respect, and helping reduce suffering. These values are presented in the form of an ‘ethical compass’ to guide the conduct of the wide range of people involved in research in global health emergencies. Such emergencies are challenging environments in which to conduct research, involving much disruption, distress and uncertainty about how and when to proceed and who to involve. The ethical compass will support people in addressing these uncertainties, both on the ground, and at policy level.
Professor Michael Parker, Chair of the Nuffield Council on Bioethics working group on global health emergencies, and Director of Ethox and WEH said:
“Research undertaken during global health emergencies involves real people, families, and communities. It asks a great deal of them, primarily in the interests of others, at a time of great distress, fear, and vulnerability. We are asking anyone involved in planning, funding, and conducting research to bear this at the forefront of their minds throughout all stages of research. Listening to communities, understanding their needs and designing research that will truly help to reduce people’s suffering whilst demonstrating respect are the ideals that all research projects should be striving for.
A key finding of this report is the vital importance of properly resourced preparedness between emergencies. Preparedness and emergency planning are essential for many reasons: they mean emergencies are less likely to happen and more manageable when they do occur. They also mean that the requirements for valuable, ethical research to be conducted are more likely to be in place.”