Postdoctoral Fellow, National Human Genome Research Institute Arizona State University Rockville, Maryland
Abstract: Introductory bioethics students learn that informed consent is a first principle of the field. However, students have arrived in every one of my bioethics courses already thinking about informed consent, arguing that it is necessary for protecting autonomy and respecting individuals - long before reading the Belmont Report. Students concoct creative ways to insist on the importance of knowledgeable choice and they articulate heterodox framings of its underlying principles. They try to resolve conflicts and advance justice by ensuring that individual decision-makers receive enough of the right kind of information to make autonomous decisions. In other words, they already have sophisticated ways of negotiating between competing value systems via informed consent.
This talk examines informed consent as a civic epistemology: a collectively held cultural logic that shapes not only the conduct of biomedicine, but the everyday ways that Americans structure social relationships. A great deal of existing scholarship on consent interrogates how well it is executed: is choice sufficiently informed? Is an agent adequately capacitated? Is an individual the right chooser? Those questions are effective for evaluating implementation, and invite further inquiry into the norms and functions naturalized through informed consent itself. I examine a series of cases to explicate its mechanics and social function. These cases, spanning tensions within university liability policy during the Covid-19 pandemic to the practice norms of genetic counseling, assume the background centrality of informed consent as an epistemic framework, and examine the ways that power is exerted and responsibility demanded through it.
.png)