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.

Keywords:

• Uganda
• HIV/AIDS
• global health research ethics
• social value
• risk and consent
• therapeutic misconception

Acknowledgements

This study was funded by a Fulbright New Century Scholars grant. Nelson Sewankambo (2000), Makerere University College of Health Sciences, is co-PI with Kearsley Stewart. We thank Wawer et al. (1999) and Gray et al. (2001), co-PIs with Sewankambo on the Rakai Health Sciences Programme, for allowing us to interview participants from the CHER sub-study of the Rakai Health Sciences Programme. Since 1990, the Rakai Health Sciences Programme has enrolled over 10,000 study participants in a variety of epidemiological, clinical and behavioural studies. Twenty years of research at RHSP is described at http://www.jhsph.edu/rakai/. Many thanks also to Jennifer Wagman for her invaluable logistical support in Kalisizo, Uganda. Special thanks to our ethnographic research team for unflagging enthusiasm for the project: Catherine Bbosa, William Ddaaki, Immaculate Nakiyingi and Richard Sekamwa. Many thanks to the administrators and people of the towns of Katana and Mugoye for participating in these discussions.

Notes

1. This paper does not discuss informed consent or assent for vulnerable populations, such as children or prisoners, or diminished autonomy of mentally incompetent persons.

2. For an alternative translation of this phrase, see Rowe (1991).

3. A much larger survey (N=811), conducted at the same time as our qualitative study, found similar results (Thiessen et al. 2007, p. 2495).

4. Available at http://apps.who.int/gb/ebwha/pdf_files/A61/A61_R21-en.pdf

5. Available at http://www.uneca.org/sciencewithafrica/

6. Available at http://www.bamako2008.org/; this was followed up in January 2009 with the WHO Executive Board's EB124.R12 WHO's role and responsibilities in health research, available at http://apps.who.int/gb/ebwha/pdf_files/EB124-REC1/2B124_REC1-en.pdf