Refusing the information paradigm: informed consent, medical research, and patient participation

Abstract

This article challenges the assumption that patient autonomy can best be assured by providing proper information through formalized procedures such as informed consent. We suggest that to understand and consider laypeople's ways of knowing and decision making, one has to move beyond the information paradigm and take into account a much broader context. Concretely, we investigate informed consent in connection with donating skin tissue remaining from medically indicated surgery. We use interviews with patients and observation protocols to analyse patients' perceptions and ways of making sense of informed consent beyond its bioethical ideal. Patients situate themselves in a larger system of solidarity, enroll in an overall positive image of science as a linear process of innovation oriented towards output, and simultaneously take a pragmatic stance towards hospital routines as a necessary passage point towards receiving good treatment. Because informed consent is one of the central articulations between the biomedical system and society, we conclude by reflecting on the consequences of our findings on a socio-political level.