Informed consent requirements in HIV testing in Zambia : 'a question of a borrowed bucket'?

Kasoka, Kasoka (2018) Informed consent requirements in HIV testing in Zambia : 'a question of a borrowed bucket'? Doctoral thesis, Birkbeck, University of London.

Abstract

Background - Zambia has one of the highest rates of HIV prevalence in the world. As of the year 2016, HIV prevalence in Zambia stood at 13.3% among people who are between 15-49 years of age. It is very important to reduce this, and to ensure that PLWHA are able to access appropriate treatment and support. This results in a better quality of life, improves health and well-being, and can help combat the stigma associated with the disease. In order to achieve this, PLWHA need to know their status, and this means testing. This is why exploring informed consent to testing – and understanding whether the value of autonomy and its application in HIV informed consent practice is appropriate, is important to this research. This research focusses on reviewing the appropriateness of individual autonomy in HIV testing in the Zambian context. Methods - I conducted both literature analysis and fieldwork for this study. I reviewed the notion of individual autonomy and informed consent by analysing the value from both Western liberal and sub-Saharan African (Zambian) traditional and moral theses. Having reviewed the value through literature analysis, I also decided to go to Zambia to learn about how the ordinary people there experience and view their autonomies, particularly in HIV testing. 103 participants from Lusaka and Chongwe, Zambia took part in this research’s fieldwork. The participants came from various demographics: PLWHA, pregnant women (and women in general), men in general, churchgoers, health-providers, policymakers, and participants in rural areas. Results - The results showed that the universalisation of the value of individual autonomy in HIV testing in the sub-Saharan Africa is inappropriate. It was found that individual decision-making is inextricably enmeshed in multiple influences – factors both internal and external to an individual – therefore, also making rational choice (internalist) theories to be inadequate accounts of autonomy. It was concluded that individual autonomy is an illusion. Moreover, it was also found that application of individual autonomy in HIV testing in the Zambian (and sub-Saharan Africa context) is morally indefensible. It was demonstrated that HIV does not only affect PLWHA, but also the common good. Conclusion - The findings have confirmed that individual autonomy is an illusion; and indicated that sub-Saharan Africa has an indigenous value system of Ubuntu which can appropriately be transposed in HIV testing informed consent requirements in Zambia. The traditional African ontological thesis of the human condition offers a more plausible basis for HIV informed consent requirements than the Western liberal perspective.

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