Julia Dias (AFN), with informations from Nuffield Council on Bioethics
With support of Fiocruz, the Nuffield Council on Bioethics has issued on January 29th 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. Brazil has experienced a similar situation during the Zika virus outbreak, in which little was known about the congenital effects of the virus and research needed to move quickly. Fiocruz has played a central role in responding to the emergency, before, during and after the outbreak.
“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 organizations and society guarantee respect for the local community and respond to their most pressing needs”, said the President of Oswaldo Cruz Foundation (Fiocruz), Nísia Trindade Lima.
Following a two-year inquiry, the Nuffield Council’s Call for Action highlights a number of proposals. Among them: more investment in community engagement so that local voices can be heard; ensuring that, before proceeding with any research project, participants’ basic health needs are being addressed; and better support for emergency planning, to secure robust health and health research systems. To achieve this, funders will need to work in partnerships with humanitarian organizations and health ministries to achieve this.
“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”, said the Chair of the Nuffield Council on Bioethics working group on global health emergencies, professor Michael Parker.
“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 defense of the right to health and full citizenship as central values", complements the president of Fiocruz.
Besides Fiocruz, other international research institutions and organizations support the Call for Action, including the International Rescue Committee, The African Academy of Sciences, Médecins Sans Frontières UK, London School of Hygiene & Tropical Medicine, Elrha - a global humanitarian research charity and Geneva Centre for Education and Research in Humanitarian Action.
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.
“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”, summarizes Parker.