Abstract
ABSTRACTThe provision of gifts and payments for healthy volunteer subjects remains an important topic in global health research ethics. This paper provides empirical insights into theoretical debates by documenting participants' perspectives on an Ebola vaccine trial in West Africa. This trial provided hundreds of Africans with regular payments, food packages and certificates for participation. The researchers conducting the trials considered these socioeconomic provisions to be gifts in accordance with contemporary ethical standards and principles. Trial participants viewed them differently, however, approaching trial participation as a means for training and employment in what was from their perspective a new job market: the post-Ebola expansion of research and health care systems. This paper analyses participation in contemporary research by viewing the context-specific histories of trial participants through the lens of prior interventions, specifically participatory reintegration programmes conducted in Anglophone West Africa to overcome civil war crises. In particular, we argue that participation in the Ebola vaccine trial was inadvertently shaped by the design and outcomes of past reintegration programmes. Our results highlight the need to investigate existing socioeconomic landscapes which surround and indeed permeate clinical research as a prerequisite for understanding the participatory motives of vulnerable participants in West Africa and elsewhere.
Highlights
In 2014, several clinical trials were launched in West Africa at the peak of the Ebola outbreak, at a time when a nightmare scenario forecast over a million deaths with potentially catastrophic political results (Meltzer et al, 2014)
In light of a growing interest in conducting empirical studies to inform bioethics, this paper examines participation in an Ebola vaccine trial in West Africa, documenting how healthy volunteers understood payments and participation in research in an Ebola and post-Ebola scenario, and how unique ethical, operational and socio-political challenges influenced the experiences of participants
Hope for health, training and support. They told us about the future benefit, if you take the vaccine, after the vaccine study you will get something good for yourself ... future benefit that encouraged most of us to go there. (FGD 5). Informants stated that they voluntarily accepted to participate because Ebola vaccines generated hopes of protection from the disease, they would be getting quick money to satisfy immediate needs, and because they were promised that their lifestyle would improve in the longer term
Summary
In 2014, several clinical trials were launched in West Africa at the peak of the Ebola outbreak, at a time when a nightmare scenario forecast over a million deaths with potentially catastrophic political results (Meltzer et al, 2014). Ebola vaccine and drug trials were hastily implemented whilst international aid agencies and local authorities tried their best to offer care to the Ebola patients. Ebola research in Liberia and Sierra Leone was launched in the context of painful recovery from civil war crises, ravaging Sierra Leone between 1991 and 2002, and Liberia between 1989 and 1997, and from 1999 to 2003. These recent conflicts killed hundreds of thousands, with many more. Aid, and humanitarian agencies scrambled to address overlapping humanitarian and biomedical emergencies. Addressing ethical considerations requires time and careful planning, but the urgency of responding to the epidemic posed difficult and at times unprecedented ethical dilemmas (Caremel, Faye, & Ouedraogo, 2017; Gomez-Temesio & Le Marcis, 2017)
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