Susan Lindee, Professor and Chair, Department of History and Sociology of Science, University of Pennsylvania
Barbara Bates Center for the Study of the History of Nursing, University of Pennsylvania
Time: 12:15 p.m.
Place: 2U Conference Room, Room 2019, Claire Fagin Hall
University of Pennsylvania School of Nursing
Abstract. In this presentation, Lindee explores the intersection of extreme technical precision and "gut feelings" in the networks through which Cystic Fibrosis is understood as a medical, emotional and commercial phenomenon. Much of the knowledge about CF is both highly specific--the precise mutation out of the 1,200 CF mutations known--and functionally opaque. Knowing the precise mutation cannot predict or illuminate the arc of any single life. So contemporary genomic medicine involves both molecular, quantitative, cutting-edge technology and science, and the old-fashioned need for both practitioners and patients to process "gut feelings" and intuitive judgments about what to say, do, mandate, or forbid. Neither the technical nor the ethical/social questions are free of such uncertainties.
Genetic disease rose to medical prominence after 1950 as a result of a confluence of technological, intellectual and political change. Cystic Fibrosis was one of the first relatively common genetic diseases to be mapped and to become the focus of gene therapy, in the 1980s. In this study, Lindee looks at changing medical, social and genetic interpretations of this disease from its original identification in the 1930s, to its current status as both clinically manageable (at great effort) and genetically highly complex. She suggests that the CF story is generally relevant to our understanding of the history of genetic disease, which brings together technical detail and social uncertainty.