Development Process
The idea for the Participants’ Research Ethics Toolbox was first proposed by members of an Ebola survivor association in Guinea, as part of a wider reflection on experiences of participation in research during and immediately after the 2013-2016 West Africa Ebola outbreak.
In February 2018, Dr. Elysée Nouvet, a researcher with the Humanitarian Health Ethics Research group, was presenting preliminary findings from the study “Perceptions and moral experiences of research in Ebola affected countries” to Ebola survivor groups. Amongst these findings were reports that some Ebola study participants were confused or scared at the time of enrolling in research. Others were unsure about the difference between research and treatment. Still others remained unclear after the end of studies on whether they had been fairly treated or adequately informed. An Ebola survivor hearing these findings suggested those invited to trials in future could be better prepared next time if they received training on their rights as research participants. The Toolbox is the result of this idea.
Toolbox development launched in autumn 2018, with funding from the International Development Research Centre (Canada), the Canadian Institutes for Health Research, and the Social Science and Humanities Research Council of Canada. The Toolbox is the outcome of over two years of brainstorming, drafts, and revisions using a participatory approach. The Toolbox in its current version was piloted in Guinea in May 2021 and received final approval from representatives of the Ebola survivor community there at that time.
This toolbox would not have been possible without the collaboration and input from several groups with distinct expertise on research during public health emergencies. These include: Ebola survivor groups; clinical trialists and social scientists in Guinea, Democratic Republic of Congo and Canada; non-governmental organizations involved in research participant mobilization in Ebola affected countries; and research ethics governance experts.
