Abstract
ABSTRACT Community engagement is increasingly recognized as a critical element of medical research, recommended by ethicists, required by research funders and advocated in ethics guidelines. The benefits of community engagement are often stressed in instrumental terms, particularly with regard to promoting recruitment and retention in studies. Less emphasis has been placed on the value of community engagement with regard to ethical good practice, with goals often implied rather than clearly articulated. This article outlines explicitly how community engagement can contribute to ethical global health research by complementing existing established requirements such as informed consent and independent ethics review. The overarching and interlinked areas are (1) respecting individuals, communities and stakeholders; (2) building trust and social relationships; (3) determining appropriate benefits; minimizing risks, burdens and exploitation; (4) supporting the consent process; (5) understanding vulnerabilities and researcher obligations; (6) gaining permissions, approvals and building legitimacy and (7) achieving recruitment and retention targets.
Highlights
Community engagement is increasingly recognized as a critical element of health-related research, recommended by ethicists, required by funders and advocated in ethics guidelines, such as those issued in 2016 by the Council for International Organization of Medical Sciences (CIOMS) (CIOMS: International Ethical Guidelines for HealthRelated Research Involving Humans, 2016; Dickert & Sugarman, 2005; King, Kolopack, Merritt, & Lavery, 2014)
Community engagement is increasingly promoted in global health research
Drawing on our experience of engaging communities in low- and middle-income settings – as programme-wide initiatives (König et al, 2018; Tangseefa et al, 2018), or alongside specific studies, such as mass antimalarial drug administration (MDA) research (Adhikari et al, 2017; Adhikari et al, 2017; Adhikari et al, 2018; Kajeechiwa et al, 2017; Peto et al, 2018; Peto et al, 2018) and on others’ conceptual and empirical work (Dickert & Sugarman, 2005; Emanuel et al, 2004; Lavery, 2004; Lavery, 2018), this article describes how community engagement has the potential to complement and enhance established procedures – e.g. independent review and informed consent – to promote ethical good practice in research (Emanuel et al, 2004). This is unlikely to be an exhaustive description, because community engagement experience and evaluation are often not shared outside particular research teams
Summary
Community engagement is increasingly recognized as a critical element of health-related research, recommended by ethicists, required by funders and advocated in ethics guidelines, such as those issued in 2016 by the Council for International Organization of Medical Sciences (CIOMS) (CIOMS: International Ethical Guidelines for HealthRelated Research Involving Humans, 2016; Dickert & Sugarman, 2005; King, Kolopack, Merritt, & Lavery, 2014). The term community engagement is interpreted in different ways across the domains of health promotion, health-related research and policy-making (Tindana et al, 2007). In part, this results from a varied understanding of the concepts “community” and “engagement” (Marsh, Kamuya, Parker, & Molyneux, 2011; Wilkinson, Parker, Martineau, & Leach, 2017). A broader definition, which is relevant for research-related engagement, emphasizes how communities are collections of individuals with interests or a stake in the conduct and/or outcomes of a study and/or the interactions with the research team (King et al, 2014). In this article, community is considered to include the residents of settlements where health research is conducted, potential study participants, all other residents in the immediate locality and stakeholders from outside the area, including the ministries of health, public healthcare authorities, local research institutes and researchers
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