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Abstract

This dissertation investigates how people manage to communicate complex information to individuals who lack the background to understand it. At least, that is its “plain language” synopsis. In fact, I have worked to complicate most of the terms in that first sentence: What does it mean to have successfully “communicated with” (or “informed”) someone when one fears the semantic content of the message was not taken up? How is “information” constituted as sufficiently “the same” after being transformed across epistemic and material modalities? How do people come to ascribe “background” knowledge and uncertainty to their interlocutors and imagine a common ground of presuppositions about the material under their mutual consideration? This dissertation is based on nearly twenty months of fieldwork at a large academic hospital in the American Midwest. It centers on a clinic that provides what my interlocutors term “individualized medicine,” primarily genomics-based testing for rare and undiagnosed medical conditions and end-stage (or “no-option”) cancers. The titular modifier individualized represents a crux in my analysis of the clinic. It plays a number of – occasionally contradictory – roles for the different people with whom I worked. For some, medical practice is directed at patients as relatively unique combinations of an ever-increasing number of universal dimensions of health. They see the individual as the intersection of, say, a genetic profile, certain quanta of childhood exposures to environmental toxins, and classic demographic labels. For others, individualized medicine means medicine that deals with patients as irreducibly biographical, what I call a reductio ad individuum. They come to treat their patients by hearing their personal narratives and privilege “face time” over statistical reasoning. Of course, the two extremes are discursive models, but they are also discursively schismogenic, each escalating in rhetoric in specific contrast to the other. This schismogenesis also undergirds the different professional identities in the clinic, creating and contrasting different roles and relations to the practice of genomic medicine. Each chapter in my dissertation looks at a particular set of complications and externalities to what my interlocutors, in various contexts, gloss as ‘translation’ – e.g., the conversion of scientific research into clinical practice, the simplification of complex propositions, the material transformation of a blood sample into a digital record of its genetic code. I argue that maintaining explicit uncertainty across ‘translations’ is key to professionals’ preservation of their roles as both ethical and expert.

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