Abstract

In the light of the growing involvement of community advisory boards (CABs) in health research, this study presents empirical findings of the functions and operations of CABs in HIV/AIDS vaccine trials in South Africa. The individual and focus group interviews with CAB members, principal investigators, research staff, community educators, recruiters, ethics committee members, trial participants and South African AIDS Vaccine Initiative (SAAVI) staff members demonstrated differences in the respondents' perceptions of the roles and responsibilities of CABs. These findings question the roles of the CABs. Are they primarily there to serve and be accountable to the community, or to serve the accomplishment of the research objectives? Four emergent themes are discussed here: purpose; membership and representation; power and authority; sources of support and independence. The CABs' primary purpose carries significant implications for a wide range of issues regarding their functioning. The dual functions of advancing the research and protecting the community appear to be fraught with tension, and require careful reconsideration.

Highlights

  • There is growing attention to the principle of establishing community advisory boards (CABs) to advise investigators on the conduct of health research

  • In a 2005 statement by NIAID, CABs were envisioned to provide input on scientific matters related to achieving the research objectives, and oversight on ethical issues related to protecting the interests of the participants (National Institute of Allergy and Infectious Disease, 2005)

  • The South African Aids Vaccine Initiative (SAAVI) is a programme of the South African Medical Research Council responsible for overseeing the conduct of the HIV vaccines trials in South Africa, and currently funds several HIV vaccine clinical trial sites located in the provinces of Gauteng, Western Cape, North West, KwaZuluNatal, and the Eastern Cape

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Summary

Introduction

There is growing attention to the principle of establishing community advisory boards (CABs) to advise investigators on the conduct of health research. CABs have served in HIV treatment research in the US since the late 1980s Their creation grew out of conflicts between researchers and activists, who protested the random assignment of participants to a control condition, which they regarded as effectively a death sentence (Morin, Maiorana, Koester, Sheon & Richards, 2003). These efforts signified the first steps towards assuming an ethical role for CABs in monitoring research.

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