Politics and Trust in Ebola Vaccine Trials: The Case of Ghana

"The paucity of information on the planned EVTs heightened fears and concerns and eroded their trust in the vaccine trial process and the scientists."

In the context of the 2014 Ebola outbreak in West Africa, Ghana, a country without a single case of Ebola, was chosen as one of nine sites for Ebola vaccine trials (EVTs). The announcement generated controversy in the Ghanaian news media, leading to public debates and protests on radio, television, and social media. The Parliament of Ghana eventually suspended the planned trials. This article explores the impact of political context and disease characteristics on the design and implementation of vaccine trials for infectious diseases, which take place in a milieu of trust that emerges from a combination of preexisting linkages embedded in the local and national political context.

The study emanates from a secondary qualitative analysis of in-depth interviews that were collected during the summer of 2016 as part of a larger project. The researchers selected Hohoe, Ghana, because it had received extensive media attention because of the resistance put up by the community and members of Parliament (MPs). They conducted 60 interviews (35 men, 25 women) with residents of Hohoe. Also, in view of the political context of the planned EVTs, the researchers carried out a content analysis of online newspaper publications in Ghana between 2014 and 2015.

As is explained here, the EVTs were launched and carried out within a network of relationships that included regulating institutions, scientists, volunteers, technologies, the research facility, and the Ebola virus disease (EVD) itself. Trust has been defined as involving the assumption that others will behave in a particular way, which, in turn, will lead to an anticipated positive or negative outcome.

Another core concept to the argument being made here is that of control, which refers to processes that regulate the behaviour of members to achieve organisational goals. For example, in the context of vaccine trials, scientists exert methodological control in the formulation of the protocol, as well as in their use of appropriate methods, materials, and machines for collecting and analysing data.

Trust in clinical trials is built on the social structures embodied in the institutions that regulate the activities of those to be trusted. In vaccine trials, scientists and volunteers are not members of any common, formal organisation, so trust is formed based on the assumption that the social structures exercise control by creating order. This is the idea of "tandem", which describes trust/control dynamics.

Having outlined these concepts, the authors argue that in the Ghana EVTs, the trust/control nexus was distorted by the characteristics of EVD (e.g., frightening symptoms and the absence of any cure), even before the trials were approved. Much of the controversy surrounding the failed vaccine trials stemmed from: (i) the belief that implementing the trials would lead to Ebola infections in Ghana; (ii) the allegation, based on newspaper publications and rumours, that trials were already being carried out in secret; and (iii) the contention that volunteers were lured by sums of money to participate in the trials. These conditions undermined community trust in the safety of the vaccine trials. Linkages between volunteers, scientists, and the regulating institutions could not be forged for the implementation of the EVTs, even when they were eventually approved.

In the following sections, the researchers discuss media reports and parliamentary response to the trials and the nature of the community response. For example, "Hohoe community members, health workers, and regulatory institutions quickly developed concerns about the intent, procedures, and origins of the proposed trials. They did not trust its safety and thus had reservations about participating in the trials. This impaired the network of relationships required for the effective conduct of the trials and eventually led to their cancellation. The fear that Ebola generated in people and its subsequent effect on the tandems of trust and control in the vaccine trial network are discussed..., with a focus on how the characteristics of disease may be a site of trust and control." Communication elements abound; for example: "Informants were seeking to make sense of the unnerving fact that their community has been designated for the planned EVTs in the absence of adequate information."

In short, as outlined here, the absence of a trusting relationship between the community members and the scientists decreased support for the EVTs in Hohoe. In contrast, at the peak of the Ebola outbreak in Sierra Leone, the EVT team built trusting relationships through a combination of community engagement strategies spearheaded by social scientists and leading community members. Unlike the Ghana case, they worked closely with the community, listened to and addressed their fears and concerns, dispelled rumours about the EVTs through active dialogue, and involved those who had volunteered and taken part in the vaccine trials in their outreach to the community. ("Yet the failed trials in Hohoe were not simply the result of local relationships....[L]ocal problems interacted within the larger Ghanaian political context as national politicians quickly found ways of interpreting trials for political advantage...")

Thus, this analysis "implies that vaccine communication ought to be a series of interpersonal interactions in which volunteers are encouraged to voice their concerns in their own words about the safety and risks of the vaccine, their beliefs and concepts of disease, and their religious or cultural norms regarding disease....A key feature missing in the planned Ghana trials was the voice of the community members before the announcement was made....The information and communication reflected a top-down model of scientific and medical expertise rather than a two-way communication model. The vaccine communication was not tailor-made to fit the specific context addressing the risks and safety of the trials as perceived by volunteers."

In conclusion: "Vaccine trials for highly infectious diseases require a communication model that includes an active exchange between volunteers and scientists at an early point in their planning. Such an exchange requires constant interaction between the vaccine trial team and the community with the involvement of its leaders. These interactions will...afford scientists the opportunity to have a better understanding of the fears of the volunteers while assuaging these concerns and simultaneously gaining their trust."