Action needed to ensure research is carried out ethically in global health emergencies
The Nuffield Council on Bioethics has today issued a 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.
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 a number of 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
- Médecins Sans Frontières UK
- London School of Hygiene & Tropical Medicine
- Elrha - a global humanitarian research charity
- Fundação Oswaldo Cruz (Fiocruz)
- Geneva Centre for Education and Research in Humanitarian Action
- University of Oxford, Medical Sciences Division
In its full report, the Nuffield Council on Bioethics 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. The report presents these values in the form of an ‘ethical compass’ to guide the conduct of the very wide range of people involved in research in global health emergencies. These 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, 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.”
David Miliband, President and CEO of the International Rescue Committee, said:
“This report rightly points out that better evidence is needed to tackle global health emergencies. There is no excuse for ducking the challenges involved. And in our drive for this evidence, it is critical that we put the people and communities that we serve at the centre of our work.
The populations affected by global health emergencies deserve our best efforts to produce evidence that brings real change to their lives and to engage with them with equal respect and fairness. I look forward to the further boost that this report provides.”
Professor Nelson Torto, Executive Director of the African Academy of Sciences, said:
“This report is a timely reminder emphasising inclusivity, collaboration and ethical research processes that ensure the basic needs of communities, particularly during emergencies, are met. In Africa, absent or weak research regulations can leave communities vulnerable to exploitation. During an emergency, exploitation can also be easily elevated. That is why the African Academy of Sciences (AAS) supports this call to action to mobilize research stakeholders - governments, funders, researchers, communities, humanitarian agencies - to ensure the research process is humane and empathetic in as much as it endeavours to contribute valuable knowledge to respond to future emergencies.”
Professor Anne Mills, Deputy Director & Provost, London School of Hygiene & Tropical Medicine, said:
“The London School of Hygiene & Tropical Medicine is pleased to support this important report and Call for Action by the Nuffield Council on Bioethics, highlighting the essential role that ethically-conducted research plays in responding effectively to global health emergencies. The expertise of LSHTM staff, students, and international partners has made an important contribution to this work, in areas from strengthening research capacity in conflict zones to the embedding of community engagement in outbreak research. We look forward to working further with the Nuffield Council on these crucial issues.”
Jess Camburn, CEO of humanitarian research charity Elrha, said:
“As a leading funder of public health research and innovation in some of the most challenging humanitarian settings, Elrha fully supports this critical Call for Action. There is an urgent need for greater investment in research and innovation to support humanitarian and global health emergencies, but we know that such activity will engage with people and communities at times of extreme vulnerability. It’s therefore crucial that all funders champion the adoption of the highest possible ethical standards and approaches to safeguard vulnerable individuals, and advocate for fair and equitable collaborations. We applaud the Nuffield Council on Bioethics for spearheading this work.”
Dr Nisia Trindade Lima, President of Fundação Oswaldo Cruz (Fiocruz), Brazil, said:
“During the Zika outbreak, we faced many challenges to respond to that global health emergency. It highlighted the need to ensure procedures are ethically acceptable before, during and after global emergencies, including research ethics. It is crucial that funders, health authorities, researchers, health professionals, international organisations and society guarantee respect for the local community and respond to their most pressing needs. The impact on low and middle-income countries can be devastating if we do not conduct the global health response ethically, focusing on the communities’ needs, with their input. Fiocruz is ready to support this call for action aligned with its mission aimed in the reduction of social inequalities, and the defence of the right to health and full citizenship as central values."
NOTES TO EDITORS
To request an advance copy of the report or to arrange an interview please contact:
Sarah Walker-Robson, Communications Manager
Office: +44 (0)207 681 9619
Mobile: +44 (0)7821 449 725
The report and call for action will be published on www.nuffieldbioethics.org on Tuesday 28 January 2020.
2. About the Nuffield Council on Bioethics
The Nuffield Council on Bioethics examines ethical issues raised by new developments in biology and medicine. Established by the Nuffield Foundation in 1991, the Nuffield Council is an independent body, funded jointly by the Nuffield Foundation, the Medical Research Council and the Wellcome Trust. The Nuffield Council has an international reputation for addressing public concerns and providing independent advice to assist policy makers and stimulate debate in bioethics.
3. Call for Action
The Nuffield Council on Bioethics’ Call for Action full text is as follows:
We want to maximise the contribution that scientifically robust, ethical research can make to improving the health of people affected by emergencies.
We are issuing a call for action to research funders, governments and others to:
• Ensure that research is not supported unless the basic health needs of research participants are being addressed through the response effort. Research funders will need to work in partnerships with humanitarian organisations and ministries of health to ensure this.
• Invest in putting community engagement mechanisms into emergency research to make them a reality. In the longer term, engagement must be a central part of local healthcare systems to ensure sustainability and preparedness.
• Promote fair and equitable collaborations between research organisations, particularly between external research institutions and their local partners in high- and low-income settings.
• Support emergency planning - including securing robust health and health research systems - given the vital importance of properly resourced preparedness between emergencies.
4. About the working group
This report and call for action follow a two-year in-depth inquiry run by an international working group. Many contributions from across the globe to this work were made through responses to an open call for evidence, participation in roundtable and one-to-one meetings, reviewing early drafts of the report, and involvement in numerous international workshops and events.
Members of the working group were appointed for their personal knowledge and expertise, and do not necessarily represent the views of their organisations.
Working group members:
Michael Parker (Chair)
Emily Ying Yang Chan
Beatriz da Costa Thomé
Affiliations and biographies of working group members are available at: https://nuffieldbioethics.org/publications/research-in-global-health-emergencies/about-the-working-group.