Strengthening the ethics of clinical research for participants in Ebola affected countries

As confirmed by the WHO's guidelines on risk communication and community engagement issued for the 2018 Ebola outbreaks in the Democratic Republic of the Congo (DRC), research is a critical component to both outbreak control measures and future preparedness activities. However, many of the adults recruited to these future studies have limited literacy and no prior exposure to the concept of research. These vulnerabilities are heightened during a public health emergency, particularly when the local context is rife with fear, confusion, and misinformation, and when international standards of research ethics are not always upheld. Heavily informed by the 2014 Ebola outbreak in West Africa, this project aims to support the ethical conduct of research in Ebola-affected countries. A multidisciplinary team of Canadian and African researchers will work with researchers, ethicists, Ebola survivor groups, and civil society leaders to characterize the key considerations and tested approaches for clear research communications with limited-literacy adults in sub-Saharan Africa. The team will then develop and pilot a toolbox of open-access and multilingual resources for the individuals and communities approached to participate in research. This "ethics primer" toolbox will be developed using a participatory research approach through community consultations and community piloting of resources and prototypes, and will be shared with an extensive network of project partners in academia, civil society, and patient advocacy groups, along with ethics oversight bodies in the DRC, Guinea, and Sierra Leone. This project is funded by the Rapid Research Fund for Ebola Virus Disease Outbreaks, a CA$1.5 million initiative that was mobilized and co-funded by IDRC, the Canadian Institutes of Health Research, and the Social Sciences and Humanities Research Council of Canada. The Fund supports four collaborative projects jointly led by Canadian and African researchers.