Okukkera Ng'omuzungu (lost in translation): Understanding the social value of global health research for HIV/AIDS research participants in Uganda

Abstract

As major global governance entities begin to re-assess the structure and goals of health research in resource-poor settings, social science can make a vital contribution by expanding the traditional field of research ethics to include new concepts such as the social value of global health research. This essay recasts the definition of social value in health research by shifting away from the official spaces where research occurs and towards the meaning of research as it is produced in the everyday spaces inhabited by the local community. We present three cases that reveal the local view of the social value of health research for Ugandans: autonomy and consent; the concept of risk; and what appears to be a classic case of therapeutic misconception between researcher and informant. Ultimately what we see, we argue, is the fundamental collision of the logic of biomedical research with the logic of local social relationships, that is, researchers perform their role as a transaction, while participants anticipate their involvement in research to be transformative. When we expand the analysis of the impact of research from the research/participant dyad to shifting community networks, we conclude that didactic models, such as the therapeutic misconception, are of limited utility for understanding the social value of global health research in resource-poor settings.