The trouble with difference: Challenging and reproducing inequality in a biomedical HIV research community engagement process

Abstract

Community engagement in biomedical trials is to ensure ethical conduct in research, yet it has been criticised regarding power and exploitation of vulnerable communities where trials take place. This makes community engagement processes complex. We report on one example of how the global politics of biomedical research and local issues of contemporary politics and identities intertwine in a community engagement process. These issues emerged during observations in staff training at a biomedical HIV prevention trial centre in South Africa from September to November 2015. Within the practices of the training sessions, the sessions had an unintended and not explicitly discussed purpose, termed the hidden project of creating a safe space for participants to discuss issues of difference. Examples are culture and greeting practices, culture and respect and the politics of language. Creating a space during training sessions where issues of power may be discussed is a prime example of community engagement. Engagement includes creating the space to discuss differences and collaborative bases. Processes of meaningful community stakeholder engagement, as illustrated by the training sessions, may contribute to combination prevention of HIV by promoting the integration of behavioural, sociocultural and biomedical efforts, and by a more developed understanding of power.

Keywords: South Africa; biomedical trials; community engagement practices; inequality; participant observations.