A Critical Examination of Research Narratives 'Rumours' and Passive Community Resistance in Medical Research

"There is need for ongoing engagement with community members to understand narratives around medical research in their socio-economic, political and cultural context and any differences with researchers' views as divergent modes of communication."

The introduction of medical research in sub-Saharan Africa (SSA) has often been associated with negative experiences that have affected community trust and fuelled negative narratives of health research and interventions. For instance, so-called "rumours" resulted in boycotting of polio vaccine in Nigeria. Following on existing literature that has discussed research "rumours" as signalling poor relationships and mistrust between trial communities and researchers, this paper discusses research narratives framed as "rumours" in two research communities as divergent communication that expresses local critiques and legitimate concerns among research participants and the wider community.

Building on the work of Foucault, scholars have critiqued biomedicine because it requires prescription of norms and imposes truth about health that may interfere with individual choices. Foucault also states that "knowledge is power"; power allows medical researchers to produce knowledge or present medical ideas as "rational" while dismissing indigenous knowledge or lay perspectives as being "irrational". As power related to individual or collective choices pertaining to health is exerted, it generates resistance. Passive resistance may manifest through passive forms such as non-cooperation, silence, avoidance, or deception - as opposed to violent confrontations. Passive resistance is not to be confused with passivity; rather, it is defined here as "a non-confrontational expression of agency to refuse research that does not address community concerns".

The paper draws on experiences from ethnographic research conducted by the first author, a female Malawian social scientist, which aimed to understand community engagement in medical research projects conducted in Malawi. Though reference is made to an urban case study involving the collection of nasal swabs from primary school children in an observation study and a rural case study implementing community-based malaria control interventions, the discussion in the paper focuses more broadly on prevailing research narratives from previous health interventions, as well as emerging narratives during research implementation.

In addition to the ethnographic research, 43 in-depth interviews (IDIs) and 17 focus group discussions (FGDs) were conducted with research participants, non-research participants, community leaders, research staff, and research volunteers in both sites to understand their experiences with research. The study was conducted in urban Blantyre and rural Chikwawa districts from June 2015 to July 2016.

The researchers observed that respondents' (FGD and IDI participants') previous experiences with medical research practices or health interventions and the disconnect they experienced between promised health benefits and lived reality resulted in divergent communication. For instance, in the urban case study, FGD participants expressed concerns that researchers only communicated positive aspects of health interventions during community meetings to encourage participation without disclosing side effects, and this affected their trust in medical or health research and interventions.

Furthermore, even though such community meetings were held to improve participation, "rumours" about research influenced decision making. "Rumours" presented local critiques of medical research that expressed what the researchers characterise as legitimate concerns informed by historical experiences and local conceptualisation of health. Structural inequalities, negative outcomes, or absence of visible benefits following research participation contributed to unmet expectations, discontent with research, and consequently passive resistance.

For example, since the urban case study involved taking nasal swabs from children in some of the schools that had participated in a previous schistosomiasis intervention, this historical experience led to suspicion and passive resistance. Some parents resisted the research by not responding to the invitation letters, while children also resisted by not delivering the invitation letters to parents. These actions imply passive resistance or silent refusal, because some parents and children did not openly refuse, and yet they deliberately avoided research.

Reflecting on that example, the researchers stress that "Labelling...concerns as 'rumours' is a missed opportunity to understand community's socioeconomic realities, their views and experiences with previous medical research/interventions that may shape future adoption of health interventions. This example also underscores the value of ongoing engagement with participating research communities to address divergent perspectives and prevent negative legacies about medical research/interventions that may affect future participation in medical research and interventions."

Some of the research narratives framed as "rumours" expressed local critiques, particularly around medical research projects that were perceived to be taking frequent blood samples among sick people. Most of the FGD and IDI participants associated frequent blood "pumping" with "blood depletion", ill health, and death. As such, they attributed death of a research participant to anaemia when researchers drew blood samples. A narrative about a research participant who died while being followed up by researchers at their home to draw blood samples circulated in the urban community widely.

While some research staff in both case studies attributed concerns around blood samples to illiteracy, negative experiences - particularly among people whose family members or friends experienced negative outcomes - spread reluctance to participate among people in their wider social networks. The researchers caution that "Labelling such concerns as 'rumours' or superstition, is a form of 'othering' that exoticises local understanding and negates research participants' perspectives as less worthy of consideration....Moreover, attributing research participants' concerns to ignorance raises questions about the extent to which research and its relevance has been communicated in ways that participants can understand. This also raises potential ethical questions around conducting research in low literacy settings with people whose capacity to comprehend medical research is deemed low."

The paper also cites examples of when "rumours" can be enablers of positive behaviour change. In the rural case study, initial fears that mosquito traps would suck human blood were cleared when none of the research participants reported negative experiences. Research staff and FGD participants claimed that information about research participants' experiences of the malaria control interventions spread beyond intervention villages. For instance, some people in non-intervention villages started covering their windows with bed nets or wire mesh because they heard positive experiences through their social networks. This example shows how decision making around research participation is informed by evolving encounters with medical research that are often validated (positively or negatively) through social networks, hence emphasising the importance of ongoing engagement.

The researchers conclude that "one off community engagement meetings do not suffice to address the legacy of negative research narratives or elicit emerging concerns that may ultimately be detrimental to future research participation and adoption of health interventions....[A] better way of understanding the different epistemic forms circulating around medical research would be to understand research participant's views in their socioeconomic, political and cultural context and any differences with researchers' views as divergent modes of communication. Ongoing engagement with communities throughout study implementation and critical self-reflection is necessary to decode and respond to collective concerns expressed through 'rumours'."