I spent about twenty months in a genetics clinic in the urban American Midwest. I shadowed genetic counselors, worked in medical ethics, observed in the laboratories, and attended case conferences and board meetings. I also interned in Patient Education, where writers produce pamphlets on healthcare issues for patients from the general public. It is in one of my chapters that focus on this aspect of my fieldwork that page 99 falls. While Patient Education is more peripheral to my actual dissertation, the argument I develop on this page is in fact central to the monograph as a whole. My primary concern in undertaking the project was to examine how experts in a given field communicate complex information to others who lack the background knowledge to understand the information fully. Geneticists face this problem when talking to patients, just as biologists struggle to explain scientific intricacies to clinicians.
Patient Education acts as a group of specialists who ‘simplify’ complex and jargon-riddled propositions into something they consider ‘readable’ for the ‘average’ patient. Such simplification, however, is not itself a simple process. Patient Education serves as a prime site to unravel the rich local theories of language-in-practice that dominate in the hospital. Page 99 of my dissertation lands in the middle of my demonstration of how these employees of the clinic understand specific verbiage’s effects on patients’ emotions and behaviors, and in turn patients’ acquiescence to the demands of prescribed healthcare regimens. Each of my chapters analyzes a mode of translation that occurs in the clinic, examining which (types of) qualities of an object are taken to be essential for the reproduction of ‘identity’ and which (types of) qualities are either unrecognized or considered contingent. Throughout the monograph, I analyze the various gene nomenclatures used by different types of clinicians and scientists, the graphic illustrations of genetic material, and the representations of the individual patient him- or herself, among other things. In the chapter in which page 99 stands, I discuss the debates clinicians and writers have over how successfully to ‘simplify’ expert concepts like cholangiocarcinoma and whole exome sequencing.
Halverson, Colin. 2016. “Individualized: an ethnography of translation in a genomics clinic.” Phd dissertation. University of Chicago.
Colin Halverson is currently an assistant professor of Bioethics at the University of Indiana. His research focuses on communication of complex information (in particular, genetic test results), the semiotics of scientific nomenclatures and systems of classification, and lay patient and clinician imaginations of medical knowledge production. You can reach him by email at firstname.lastname@example.org.