Mobilizing Mutations: Human Genetics in the Age of Patient Advocacy - Hardcover

Navon, Daniel

Hardcover

ISBN 10: 022663809X ISBN 13: 9780226638096

Publisher: University of Chicago Press, 2019

Synopsis

With every passing year, more and more people learn that they or their young or unborn child carries a genetic mutation. But what does this mean for the way we understand a person? Today, genetic mutations are being used to diagnose novel conditions like the XYY, Fragile X, NGLY1 mutation, and 22q11.2 Deletion syndromes, carving out rich new categories of human disease and difference. Daniel Navon calls this form of categorization “genomic designation,” and in Mobilizing Mutations he shows how mutations, and the social factors that surround them, are reshaping human classification.
 
Drawing on a wealth of fieldwork and historical material, Navon presents a sociological account of the ways genetic mutations have been mobilized and transformed in the sixty years since it became possible to see abnormal human genomes, providing a new vista onto the myriad ways contemporary genetic testing can transform people’s lives.
 
Taking us inside these shifting worlds of research and advocacy over the last half century, Navon reveals the ways in which knowledge about genetic mutations can redefine what it means to be ill, different, and ultimately, human.
 

About this title

About the Author

Daniel Navon is assistant professor of sociology at the University of California, San Diego.

Review

"What does it mean to ‘mobilize’ mutations? In his crystal clear and compelling analysis, Navon reveals the potent intertwining of medical breakthroughs with new ways of imagining who we are, how we are connected to others, what diseases we suffer from, and how we should best be cared for. This is a first-rate study of scientific and cultural changes on a topic of ever-growing significance." (Steven Epstein, author of Inclusion: The Politics of Difference in Medical Research)

"Full of fascinating insights and arguments, Mobilizing Mutations breaks new intellectual and conceptual ground without departing from its solid empirical foundations. Exploring the nexus between biomedical research and patient advocacy as a key to the analysis of the emergence of ‘genomic designations,’ i.e., pathological syndromes that are de novo defined by genomic analysis rather than pre-existing clinical symptoms, the book chronicles the accretion of new patient populations—new kinds of people. Far from merely complementing the work of others, Navon takes us in unexpected directions, as epitomized by the notion of reiterated fact making that casts objects of knowledge at the center of his combined sociological, historical, and epistemological endeavor." (Alberto Cambrosio, McGill University)

"Navon's important and thought-provoking book brings a fresh sociological perspective on rapidly moving advances in medical genetics. This work marks an overdue and welcome departure from social scientists' long-standing aversion to genetic 'labeling.' With an engaging and persuasive style, Navon sheds new light on the profound impact of genetic diagnoses on individuals, families, advocacy groups, and society as a whole." (Brenda M. Finucane, Geisinger Autism & Developmental Medicine Institute and former president, NSGC)

“A brilliant insight in the cutting edge of genomics. Navon expertly reveals how genetic knowledge changes our identities, biologies, and diseases and, vice versa, how social action allows some genetic mutations to define who we are while others languish in medical journals. The genomic revolution is a social revolution.” (Stefan Timmermans, University of California, Los Angeles)

Edition details

• Publisher: University of Chicago Press
• Publication date: 2019
• ISBN 10: 022663809X
• ISBN 13: 9780226638096
• Binding: Hardcover
• Language: English
• Edition number: 1
• Number of pages: 384