STS Circle at Harvard
Dan Navon (Harvard, Robert Wood Johnson Fellow), "Mobilizing Mutations: New Kinds of People at the Intersection of Genetics and Patient Advocacy"
Sandwich lunches are provided. Please RSVP to firstname.lastname@example.org by Wednesday at 5PM the week before.
Abstract: Fragile X, XYY and 22q11.2 Deletion Syndrome are all rare diseases fixed to specific genetic mutations. However these and many other genetic conditions are often so variable in their presentation that no clinician could diagnose them. For decades they attracted little interest outside of human genetics. Today, by contrast, huge amounts of resources and attention are dedicated to these disorders with the goal of improving health outcomes and unlocking the genetic basis of more common conditions like autism. What accounts for this shift? This talk will draw on fieldwork and comparative-historical methods to explain how novel alliances of patients, advocates, and biomedical experts have been formed around genetic mutations. In this way, I show how knowledge about our genomes can create powerful new categories for understanding and acting on human difference.
Biography: Daniel Navon received his PhD in sociology from Columbia University in 2013 and is currently a Robert Wood Johnson Foundation scholar at Harvard University. His research has appeared in venues like Social Studies of Science, BioSocieties, The Journal of Historical Sociology and Social Science & Medicine, and he is currently finishing a book project on the emergence and impact of new categories of genetic illness over the last half-century.