Trust, Trustworthiness, and the Conflict Between Community Consent and Individual Autonomy

Abstract

In both the bioethical literature and guidelines, community consent in biomedical research involving human subjects increasingly promoted. Community consent can take different forms, but commonly involves asking permission to community leaders before approaching potential research subjects individually. Although there is an intuitive appeal to community consent, it can conflict with standard informed consent and autonomy by restricting the choice of (some) community members. In this thesis I will address both sides of this conflict and offer a way in which it can be decreased. I will argue that community consent can be of significant value for community members by protecting their self-understanding. When this is based on trust and trustworthiness, community consent is likely to be in line with the theory of autonomous action that justifies informed consent. Since it is not always clear that this is the case, I end by arguing that communities must demonstrate that their community consent involves trust and trustworthiness and suggest ways in which this can be shown.