Local customs and implications for informed consent process in research in African low and middle income countries. Challenges in information disclosure, understanding and voluntariness. [THESIS]

Local customs and implications for informed consent process in research in African low and middle income countries. Challenges in information disclosure, understanding and voluntariness. [THESIS]
Miguel Paulo
Utrecht University Repository, Faculty of Humanities Theses, 2020
Abstract
The process of requesting informed consent for participation in research has been widely addressed in various international guidelines, such as the Belmont Report, the Nuremberg code and the Declaration of Helsinki. Currently, the Declaration of Helsinki is the predominant ethical guideline for conducting research with human subjects. It has an extensive section dedicated to informed consent, meant to embed in researchers the understanding of the importance and underlying core values of informed consent. While the predominant justification for informed consent requirement rests on respect for autonomy, I will argue for prevention of deception and coercion as the core value to substantiate informed consent in collaborative research in African low and middle income countries (henceforth LMIC). By using principlism as a framework, I will explore how the conflict between respect for autonomy and nonmaleficence provide support for my stance. In this paper, I scrutinize how local customs intertwined in the historical and socio-cultural context of LMIC in Africa, shape underlying dynamics in the informed consent communication process by disrupting information disclosure, understanding and voluntariness. Those aspects intersect with underlying pillars of autonomous choice, resulting in presumably undermined autonomy. Consequently, I argue that the researcher-research subject ought to be based on grounds of trust and trustworthiness in order to still validate the relevance of informed consent as currently applied. I end by arguing that a deliberative approach should be attained in improving the quality of informed consent in those settings. To this end, the intuitionist model by Heidt could be conducive for deliberations on identifying moral grounds for justifying informed consent requirements when meeting the presuppositions of the rational choice theory is not attainable.

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