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
• community engagement practices
• inequality
• biomedical trials
• participant observations

Acknowledgements

A. D. W. conducted the participant observations. A. D. W. and L. S. conceived the idea of the article. A. K., A. L. and P. A. N. supported in developing the manuscript. All other authors were part of critically reviewing the manuscript and approved the final version for publication.

Disclosure statement

No potential conflict of interest was reported by the authors.

ORCID

Anneliese de Wet http://orcid.org/0000-0002-8121-8698

Leslie Swartz http://orcid.org/0000-0003-1741-5897

Ashraf Kagee http://orcid.org/0000-0003-1241-2566

Anthea Lesch http://orcid.org/0000-0002-0245-0529

Zuhayr Kafaar http://orcid.org/0000-0001-7692-3117

Peter A. Newman http://orcid.org/0000-0003-0444-5915

Additional information

Funding

This work was supported by the Canadian Institutes of Health Research through the Canadian HIV Vaccine Initiative [grant number TH-118570].