Conceptions within Misconceptions: Pluralisms in an Ebola Vaccine Trial in West Africa

In light of the 2014 Ebola outbreak in West Africa, therapeutic and preventive misconceptions have been flagged as potential problems for Ebola vaccine research development in low-literacy research communities. How best to provide information to research participants, so that they can make an informed decision about whether to participate or not, is therefore a challenge in international research ethics. This article explores trial subjects' understandings - conceptions and misconceptions - regarding the meaning of an "Ebola vaccine" in the context of an Ebola vaccine trial in Liberia that was launched in 2014 and completed in 2016.

As detailed here, guided by bioethical best practices, Ebola vaccine trial implementers established rigorous communication with participants and their communities in order to address various Ebola-related myths, rumours, and misconceptions. For instance, trial implementers:

• Trained educators, who organised workshops to explain Ebola vaccine research and related procedures to potential trial subjects, using lay language with attention to the context. Workshops were followed by individual consent procedures.
• Established a hotline for trial subjects in order to address any questions, concerns, or complaints they had about participation.
• Dispatched community mobilisation and sensitisation teams to actively work on the ground within communities. Information about the trial was presented, and subsequently explained in a series of discussions with formal community leaders, traditional artists, and healers.
• Trained so-called trackers - people from the community who acted as a link between researchers and participants and individually addressed trial subjects' questions, concerns, and complaints over a course of frequent counselling and follow-up visits.

As part of the present study, 11 semi-structured interviews and 5 group discussions with vaccine trial participants were carried out. In total, 25 informants were interviewed. Major themes included:

• Despite well-intended efforts of vaccine research teams to educate participants and their communities, information provided about the Ebola vaccine was not always understood as intended. For instance, while some informants described the vaccine as solely targeting Ebola, many said they thought the vaccine was good for health and could prevent sickness more broadly. "As these findings suggest, there is a need to question the presumption that biomedical knowledge will be taken up in unchanged form, even when health communication activities are reinforced with sophisticated and well-executed community participation approaches."
• Informants had therapeutic and preventive misconceptions - for example, even when informants did understand the meaning of placebo, preventive abilities were attached to it. The researchers suggest that, "in order to avoid bioethical and biomedical dismissiveness of others, it is essential to accept the fact that what are routinely identified as therapeutic and other 'misconceptions' are in fact conceptions with their own logic and rationale..." For instance, in West Africa, the act of penetrating skin and injecting during immunisation is commonly viewed as having various powerful impacts on bodies, including strengthening health. Thus, informants' expectations of further therapeutic and preventive benefits from injections, whether of the vaccine or placebo, could be local variants of how injections are understood in accordance with local knowledge formations, logics of causality, and related social practices. This means that "categorising non-biomedical worldviews as misconceptions, misestimations and myths is not only unhelpful but also potentially offensive, as it would be equal to blaming the lack of shared understanding on local peoples' apprehensions, lived experiences, practices, and explanatory models."
• "Understanding the act of injecting as powerful and generating some protection in its own right, coupled with the understanding that a vaccine against Ebola can also offer protection against various other diseases/illnesses, raises a fundamental question for research ethics: How did people interpret the consent process - specifically what did they think they consented to?" When participants later, inevitably, become sick - say, with the common cold - they might experience mistrust, anger, and disappointment about the vaccine, its researchers, and public health institutions involved in the trial.

In conclusion: "There is a vital need to explore epistemological pluralism in the context of Ebola research in order to grasp what exactly is understood regarding terms and concepts such as 'Ebola' and 'vaccine'." The researchers "invite anthropologists and bioethicists to jointly theorise knowledge systems in global health research and encourage future studies to investigate the meanings attributed to the 'Ebola vaccine' in West Africa and elsewhere."