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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.

Original publication

DOI

10.1016/j.socscimed.2004.11.073

Type

Journal article

Journal

Soc Sci Med

Publication Date

10/2005

Volume

61

Pages

1463 - 1473

Keywords

Biomedical and Behavioral Research, Empirical Approach, Biomedical Research, Ethics, Research, Humans, Informed Consent, Interviews as Topic, Kenya, Trust