Description

Dr Courtney Addison is interested in the work of research ethics in this context. A paper scaffold of documents and signatures structures the systems that inform and consent patients and parents. These processes, carefully mediated by clinical staff, are designed to produce the ‘informed patient’—an archetype of contemporary medicine.

By performing understanding and submitting to the informatic logics of the research ethics system, patients become valid experimental subjects, exemplifying the disenchantment of clinical research. However, this disenchantment is both incomplete and, in some cases, potentially undesirable. Where young children are enrolled into risky medical efforts, a more complex terrain of knowing, disclosing, and pretending takes form, subsuming the logics of disenchantment and suggesting the possibility of an ethics of enchantment, instead.