Communities developing capabilities for health governance: evidence from two South African HIV vaccine clinical trial sites

Upton, Mary E (2011). Communities developing capabilities for health governance: evidence from two South African HIV vaccine clinical trial sites. In: The Human Development Capability Association Annual Conference, 6-8 Sep 2011, 3TU Institute of Technology, The Hague, Netherlands..

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Abstract

This paper responds to limited evidence of the social and political aspects of health biotechnologies. It offers empirical data on the conditions where the combined impact of negative social norms and the politics of HIV and AIDS exacerbate health inequalities. This focus on the impact of social norms, valued health resources and agency, and the challenges posed by poverty and social exclusion, stimulates questions as to what kind of development may be possible, who is able to influence the development process and in what ways. A theoretical framework from concepts of power, citizenship and social justice helps in understanding the complexities of health governance from the perspectives of communities engaged in activities beyond participation in HIV vaccine trials. 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 shed light on previously unexplored factors enhancing and inhibiting community participation in health governance. Qualitative data gathered in trial sites suggest that information about HIV and AIDS and vaccine science can increase opportunities for negotiating rather than reacting to decisions over health strategies. Further, networking with wider health and other community-based and civil society organisations develops that agency. The extent to which such capabilities can develop depends upon particular socio-cultural, historical and political conditions. The stigma and the surrounding political controversy around HIV and AIDS challenge the ideals of participation in health governance. For those who overcome barriers to health activism, the stresses of daily life tend to divert attention away from efforts to maintain that agency over time. The impact of multiple forms of stigma on women, men who have sex with men (MSM) and ‘foreigners’ confirms the value of looking at health inequalities in terms of variable health needs rather than seeking equal distribution of health resources.

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