Abstract
BackgroundWhile community engagement is increasingly promoted in global health research to improve ethical research practice, it can sometimes coerce participation and thereby compromise ethical research. This paper seeks to discuss some of the ethical issues arising from community engagement in a low resource setting.MethodsA qualitative study design focusing on the engagement activities of three biomedical research projects as ethnographic case studies was used to gain in-depth understanding of community engagement as experienced by multiple stakeholders in Malawi. Data was collected through participant observation, 43 In-depth interviews and 17 focus group discussions with community leaders, research staff, community members and research participants. Thematic analysis was used to analyse and interpret the findings.ResultsThe results showed that structural coercion arose due to an interplay of factors pertaining to social-economic context, study design and power relations among research stakeholders. The involvement of community leaders, government stakeholders, and power inequalities among research stakeholders affected some participants’ ability to make autonomous decisions about research participation. These results have been presented under the themes of perception of research as development, research participants’ motivation to access individual benefits, the power of vernacular translations to influence research participation, and coercive power of leaders.ConclusionThe study identified ethical issues in community engagement practices pertaining to structural coercion. We conclude that community engagement alone did not address underlying structural inequalities to ensure adequate protection of communities. These results raise important questions on how to balance between engaging communities to improve research participation and ensure that informed consent is voluntarily given.
Highlights
While community engagement is increasingly promoted in global health research to improve ethical research practice, it can sometimes coerce participation and thereby compromise ethical research
Outcomes of some biomedical research are likely to impact communities and not solely research participants [4]. In recognition of these arguments, recommendations to promote community engagement in health research have been incorporated in a wide range of ethical guidelines including those from the Council for International Organisations of Medical Sciences (CIOMS) which states that:
This paper extends arguments of structural coercion to ethnographic research examining community engagement in three research projects implemented in Malawi
Summary
While community engagement is increasingly promoted in global health research to improve ethical research practice, it can sometimes coerce participation and thereby compromise ethical research. While core ethical principles for human subject protection have traditionally focused on the rights of individual research participants over community interests, some have argued that this is a limited, solipsistic view, recommending a broader community-based focus on research participation [4]. The basis of this argument is that decisions are embedded within social networks and that some individuals rely on other people to make decisions on research participation [5]. In recognition of these arguments, recommendations to promote community engagement in health research have been incorporated in a wide range of ethical guidelines including those from the Council for International Organisations of Medical Sciences (CIOMS) which states that:
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