Journal
SOCIAL SCIENCE & MEDICINE
Volume 61, Issue 7, Pages 1463-1473Publisher
PERGAMON-ELSEVIER SCIENCE LTD
DOI: 10.1016/j.socscimed.2004.11.073
Keywords
trust; mistrust; informed consent; research; biomedicine; developing countries; Kenya
Funding
- Wellcome Trust Funding Source: Medline
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Trust is an important theme running through the literature on the ethics of biomedical research, but it is rarely given centre stage. In this paper, we present data gathered from a study aimed at exploring community views regarding the informed consent processes carried out by a large research centre on the Kenyan Coast. The findings point to the centrality of trust and elements of mistrust in general community views, in parents' (mis)understanding of studies they consent their children to be involved in, in refusals and concerns, and in community members' views about whether informed consent is a relevant and practical model to follow. Tentative ideas on how trust and a healthy mistrust might be balanced highlight the importance of strengthening communication surrounding basic health care as well as research, and of fostering 'an inner generated ethic of service'. The latter is particularly fundamental, but cannot be built and regulated through the laws, policies and guidelines that currently govern biomedical research practice. (c) 2005 Elsevier Ltd. All rights reserved.
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