Just over a year ago we closed our 2-year long in-depth inquiry and published our final report 'Research in global health emergencies: ethical issues'.
Our work, made possible by the collaborative effort of an international working group, aimed to guide researchers, funders, governments, and international organisations in the challenging task of conducting research ethically within contexts of global health emergencies. Back then, we could not imagine that while our report was being written up, a novel infectious disease was about to emerge and cause the global crisis that we are still living in today. Little over a year later, we thought this would be a good time to round up the work we have been doing in this area and consider the impact that our findings have had at a national and international level.
Influencing the research response to COVID-19
A significant part of our work has been dedicated to supporting research institutions and other organisations in planning and carrying out research ethically during the COVID-19 outbreak. Early in 2020, some of our working group members were invited to join various national and international expert groups that have guided the research response throughout the course of the pandemic. These include the WHO's COVID-19 Working Groups on Ethics, Vaccines prioritisation, and Social science research, the UK government's Scientific Advisory Group for Emergencies (SAGE) and the Scientific Pandemic Insights Group on Behaviour (SPI-B).
In February 2020, still very early in the pandemic, a number of our working group members participated in the WHO Global Research Forum. The Forum brought together a group of international experts and funders to anticipate key research questions, accelerate research on COVID-19, and improve preparedness for the next epidemic. Together, participants produced a global research agenda for the new coronavirus, setting priorities for the selection of research projects and anticipating key ethical issues for researchers to address. Many of the considerations included in our report were highlighted during the meeting, including those concerning community engagement initiatives, data sharing procedures, and the need of supporting frontline workers. Such deliberations were later reflected in the WHO coordinated global research roadmap for COVID-19, which was published in March 2020.
We know that our work has been recognised by others as an important source of guidance for ethical research during COVID-19. For example, the Council's report has been defined as a "key ethical guidance document" by the WHO Ethics working group in a policy brief on the ethical standards for research during public health emergencies. Our considerations on the importance of locally appropriate study designs and the benefits of early community engagement are also embedded in the WHO toolbox on good participatory practice for COVID-19 clinical trials, which indicates the Council's report as a resource for good community engagement.
The report has also influenced our own response to the COVID-19 pandemic. Our ethical compass – made up by the three moral values of fairness, equal respect, and helping reduce suffering – has guided the work that we have been doing in this area, as highlighted by Katharine Wright in a previous blog post (more about our work on COVID-19 here).
Supporting research ethics capacity building in resource-poor settings
The Council has contributed to form the Ethics working group of the COVID-19 Clinical Research Coalition, an alliance formed by a multidisciplinary team of international experts, including some of our working group members, to accelerate and facilitate COVID-19 research in low- and middle-income countries. The Ethics working group was formed to act as an ‘ethical sounding board’ for researchers in resource-poor countries and facilitate rapid ethical advice during the COVID-19 emergency. The key objectives of the COVID-19 Clinical Research Coalition and its Ethics working group, which draw strongly on the approach taken in our report, have been highlighted in an article published in the Lancet following the establishment of the coalition.
Sharing our findings around the world
Following the launch of the report, we planned to hold a series of roundtable consultative meetings in each of the WHO regions, to share the report's findings across the world and discuss their relevance in different contexts. The first of these meetings was held in Colombo, Sri Lanka, on 5-6 of March 2020 and consisted of a workshop and a training event. The workshop brought together public health specialists, health professionals, academics, as well as representatives from the Ministry of Health, the National Hospital of Sri Lanka, and the WHO Country Office. Together, they discussed the ethical challenges arising in both research and healthcare response during emergencies. The training event was hosted by the College of Medical Administrators of Sri Lanka for sixty of their trainees. Those presents discussed different aspects of the report and proposed suggestions to strengthen local research capacity and foster equitable collaborations between high- and low-income countries. A report of the workshop and training event can be downloaded here.
On 17-18 February 2021, a second global workshop was held in Conakry, Guinea. Those who attended the event included members of the Guinean National Health Research Ethics Committee (CNERS) and the Guinean Scientific Council for the Response to COVID-19 (CRS). During this two-day event, participants discussed our report's findings and ethical compass and examined their relevance in the context of the Guinean research response to COVID-19 and Ebola virus disease. A report of the workshop can be downloaded here.
With the help of The Collaborating Centre for Oxford University and CUHK for Disaster and Medical Humanitarian Response (CCOUC), The Jockey Club School of Public Health and Primary Care, The Chinese University of Hong Kong, The Iran University of Medical Sciences (IUMS) and our working group members Emily Chan, Beatriz da Costa Thomé, Karl Blanchet, and Philippe Guérin, an overview and a short version of the report have been translated into Chinese, Farsi, French, Portuguese, and Spanish. The overview has also been translated into Arabic. All the translations can be downloaded here.
Guidance and best practices
We know that our findings have influenced the work of other organisations in providing guidance for conducting ethical research in the midst of global crises. For example, in April 2020, our report was recommended for the training of ethics committee members on conducting research with human subjects during emergencies in guidance developed by the Pan American Health Organisation (PAHO). The report has also been highlighted as a resource for COVID-19 research ethics in guidance issued by national and international authorities, including the National Health Research Authority of Zambia and the Indian Council of Medical Research.
Training for researchers
Together with the Global Health Network, the Council has developed a specialist online training course, currently available in English, French, and Spanish. The course explores the ethical issues arising when conducting research in global health crises and is entirely based on the Council's report. A Portuguese course is currently under development. In partnership with the Health Research Authority, we also developed material for the training of Research Ethics Committees members in the United Kingdom.
Over the course of this year, we have had the chance to reflect on the relevance of the recommendations made in our report and Call for action for the current pandemic, particularly in the context of resource-poor settings. We have also been able to recognise the importance of international partnerships and collaborations, which have made this project and subsequent follow-up work possible. We hope to keep working to strengthen such partnerships; share our findings by making them accessible to researchers across the world; and encourage a fair, equitable, and collaborative approach to research during this pandemic and other emergencies that might come in the future.
Read the Research in global health emergencies: ethical issues report of developments.