Bioethics as Object of Study: Dilemmas of Immanence in Research Ethics Review

Abstract

This paper explores a dilemma that confronts empirical researchers who are interested in taking the field of bioethics itself as an object of study. Drawing inspiration and data from a recent Institutional Review Board (IRB) process, I discuss my current research, which explores the phenomenon of pediatric biomedical refusal – situations in which young people and their families resist or refuse forms of biomedical treatment for a range of cultural, religious, and political reasons. Standards of informed consent, “best interests”, and child protection are central problematics in my research. They are also non-negotiable principles for the ethical conduct of research with human subjects. This presents what I am calling a “dilemma of immanence,” in which my research becomes structured and governed by the very same bioethics principles that I seek to interrogate. While many social scientists wrestle with IRB regulations, I argue that this specific dilemma may be particular to empirical bioethics research – particular because our research questions and objectives coincide with the IRB’s own mandate.