Abstract
When conducting interviews or focus groups, researchers often end with a simple question; “Is there anything else you would like to add?” This article takes responses to this question provided by participants in a study of “West Africans' Perceptions of Ebola research” as its point of departure. A number of participants in that study accepted the invitation to add on to their interview at its end with details of suffering from the sequelae of Ebola in their communities, and criticisms of state social abandonment. Some explicitly asked the researcher to ensure the suffering of Ebola survivors would be recognized at the international level. These closing words exceeded the objectives of the study within which they emerged. This was a study focused on lived experiences and decision-making to participate in Ebola research during or after the 2013–16 West Africa Ebola outbreak. The study aimed to inform the ethical conduct of research in future public health emergencies. What to do, then, in the face of these participants' entreaties to the interviewer for action to address Ebola survivors' suffering and social abandonment? Can and should the public health emergency or qualitative researcher better anticipate such requests? Where participants' expressed concerns and hopes for the impact of a study exceed its intended scope and the researchers' original intentions, what is at stake ethically in how we respond to those entreaties as researchers? This paper offers reflections on these questions. In doing so, our intention is to open up a space for further consideration and debate on the ethics of how researchers respond to unanticipated requests made to them in the course of research projects, to leverage their power and privilege to advance local priorities.
Highlights
Co-led by an international interdisciplinary research team, including four anthropologists, as well as ethicists and healthcare professionals, this qualitative study had as its goal to deepen understandings of challenges and strategies for the ethical conduct of research during public health emergencies
Co-designing the study with input from Ebola research participants may have enabled us as a research team to anticipate and plan for requests for help and action beyond the conduct of research in public health emergencies. Such early conversation and collaboration with Ebola research participants might have led to us explicitly ask those we interviewed to reflect on our study objectives, and the ethics of international researchers working to influence policy in one domain, when that domain is not the study participant’s main concern
To do so would reproduce the very exclusion of knowledges of people who had participated in Ebola research that our study had set out to address
Summary
There is, but it does not relate to her own experience of research participation: Well, because the most important thing [is] the survivors are here that Ebola virus hit, they are all over the country. Some of them are having eye problems, kidney problems, some of them are suffering a lot, but if some of them listen to this interview, let them come to their aid, let them come help them. Some of them they lost their parents, they are not able to go to school, some of them don’t have houses to sleep.
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