The Politics of Health: Community Engagement in South African HIV Vaccine Trial Sites

Upton, Mary Ellen (2011). The Politics of Health: Community Engagement in South African HIV Vaccine Trial Sites. PhD thesis The Open University.

DOI: https://doi.org/10.21954/ou.ro.000082d6

Abstract

This research responds to limited evidence of the social and political aspects of health biotechnologies. Reaching beyond the literature on trial participation, it explores the extent to which members of Community Advisory Boards (CABs) play meaningful political roles in South African vaccine clinical trial sites. The thesis confirms the need to understand the socio-economic, political and historical contexts in which local health initiatives are situated, by identifying the combined impact of negative social norms and the politics of HIV/AIDS which limit access to health. Interviews, focus groups and observations gathered in trial sites and documentary data reveal complex interrelationships between global and national health governance and local agency. Concepts from theories of social justice, governance, power and citizenship develop the literature on health activism beyond the descriptive by providing a theoretical framework to understand that complexity. Empirical data reveal the complexities of the lives of people who are at the receiving end of global health policy and the realities of the political channels open to them; shedding light on previously unexplored factors enhancing or inhibiting community participation in health governance. Information on HIV/AIDS and vaccine science increases opportunities for negotiating rather than reacting to decisions over health strategies. Networking with wider health and other community-based and civil society organisations develops that agency. However,the ideals of community engagement are challenged by: the political dynamics of CABS which frustrate collective action; intermittent contact between trial site researchers and CABs; the accountabilities of researchers to donors and communities; and limited representation of those heterogeneous communities. The impact of multiple forms of stigma on marginalised and vulnerable women, Men Who have Sex with Men (MSM) and migrants confirms the value of looking at health inequalities in terms of variable health needs in context rather than seeking equal distribution of health resources.