Daniel Navon on Genetics and Patient Identity


2:30 “Genomic Designation”: what happens when we start to use genetic variation as the basis for disease classification?

7:50 “Genomic identity” recasts patient stories.

17:35 The XYY story and the classic genetics catch-22.

22:40 22Q11.2: An example of genomic designation that changes medical classification and diagnosis in quite radical ways.

34:05 Autism: an increasingly broad phenotype that expands the disease community.

45:50 What makes a condition an identity and not a manifestation of a disease? A community that invests in it, that defines itself.

A conversation with Dan Navon, associate professor of sociology at the University of California, San Diego, and the author of Mobilizing Mutations: Human Genetics in the Age of Patient Advocacy. Dan’s book encourages us to pay attention to the subtle way in which defining conditions according to their underlying genetics affects the patient experience, from shaping identity to creating a sense of solidarity within disease communities. Plus (spoiler) Dan will explain why he calls genetic counselors the ‘secret heroes’ of his research.

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