Informed consent: who are we informing?

Abstract

Communication is the foundation of informed consent in research. This article relays the reflections of an American urogynecology fellow and researcher in Kenya on the topic of informed consent. After learning of how a previous foreign researcher’s presence in the community had violated the trust that women placed in women’s health research, she reflects on how the standard eurocentric approach to obtaining written informed consent in research may sow breakdowns in communication and also perpetuate distrust in research. Particularly for settings in which the language is primarily spoken, or where there are varying literacy levels, the standard research consent should be reimagined to make the informed consent process more equitable and less of an exercise in documentation. Communication of research study information to patients must take into account the diverse and evolving ways in which patients best consume information, and in such a way that it ultimately enhances their autonomy.