Community Bioethics: Provocations for Institutionalized Ethics from Community-Based Biology

Abstract

In the United States, institutions of scientific and medical ethics developed out of histories that continue to shape their principles and scope of concerns. Many have identified that the movement of practitioners identifying as community-based biologists (or any of several overlapping labels) presents challenges for institutionalized ethics. Community-based biology has been the subject of ethical controversies, but it has also taken proactive measures to establish ethics of its own. We argue that the challenges that community-based biology poses for establishment, institutionalized ethics are just as significant as their challenges to establishment science more generally, and that the two are inextricable. We also assert that these challenges are more profound than either existing literature suggests or that efforts to establish ethics within community-based biology so far are equipped to address. Drawing on our experiences as social scientists working with the Open Insulin Project and community-based biology more broadly, we demonstrate several ways that community-based biology efforts problematize established approaches to institutionalized research ethics. We describe how, at the same time, efforts to institutionalize ethics in community-based biology risk reproducing features of institutionalized ethics seemingly at odds with the critiques community-based biology itself embodies. Through a series of three empirically grounded provocations, we argue that community-based biology should evolve in tandem with a community bioethics that more consciously engages critiques of institutionalized ethics and embraces the diversity and pluralism of community-based biology.