The ethics and politics of community engagement in global health research

‘We will soon be dead’: stigma and cascades of looping effects in a collaborative Ebola vaccine trial

“…Frustratingly and tragically, this complexity suggests that the ultimate solution to eradicate stigma requires the removal of its historical and intersectional layers; it requires utopian and unrealistic forms of control over the socially-embedded knowledge and feelings of peoplecontrol that cannot be achieved by ambitious attempts to design 'proper' subjectivities via social and epistemological structures within global health. Presented stories thus empirically contribute to a recent, somewhat alarming academic call to reconsider community-oriented health interventions beyond standard emancipatory, romantic and empowering connotations (Kenworthy et al, 2018;Lavery, 2018;Reynolds & Sariola, 2018;Wilkinson et al, 2017).…”

Situating trade-offs: Stakeholder perspectives on overtreatment versus missed diagnosis in transition to Xpert MTB/RIF Ultra in Kenya and Swaziland

“…Such stakeholder engagement for diagnostic development and implementation must go beyond relaying information of the diagnostic test to generate political support or product buy-in. Yet, community engagement in global health is often messy and not necessarily democratizing [8]. It serves a variety of purposes, some of which are purely instrumental in ensuring buy-in of stakeholders, others geared at a broader change in unequal power dynamics and politics.…”

“…It serves a variety of purposes, some of which are purely instrumental in ensuring buy-in of stakeholders, others geared at a broader change in unequal power dynamics and politics. The risks and benefits of community engagement activities are often unpredictable and both, empowering and instrumentalising characteristics of community engagement can co-exist within one project [8]. It is therefore essential to analyse and reflect about the process of engagement activities and their intended as well as unintended consequences throughout decision-making processes.…”

“…Although handling trade-offs is a common feature of diagnostic development and public health practice, little research has been done on how different TB stakeholders view such diagnostic trade-offs and how countries make decisions about these [7]. For global health [8], stakeholder engagement is considered an important tool in improving decision making on policy and guideline development for patient-centred care [9]. Communities can be defined by geographical proximity, shared identity, professional group or participants of an engagement event.…”

“…Communities can be defined by geographical proximity, shared identity, professional group or participants of an engagement event. Their engagement can range from merely taking consent, to educational activities or explicitly democratizing knowledge production processes [8]. Yet, detailed methods, frameworks and outcomes of such engagements for policy development are rarely published [10].…”