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

Human Genetics in the Age of Patient Advocacy

By: Daniel Navon

Hardcover | 20 September 2019 | Edition Number 1

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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 âgenomic designation,â 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 peopleâs 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.
 
Industry Reviews
"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 monograph is a cogent overview of what genetic mutations already signify and a preview of what could come next. Mobilizing Mutations would be a worthy addition to upper-level courses in the sociology of knowledge, medical sociology, and science and technology studies."-- "American Journal of Sociology"
"A critical examination of how genetic mutations create, shape and remake social patterns of inequality. . . . The monograph synthesises a historical critique with fieldwork, balancing theory with empirical evidence well. . . . Mobilizing Mutations provides a timely response to the emerging need to understand geneticisation from a sociological perspective, via the concept of 'genomic designation'. It challenges the ways in which genetic knowledge is both constructed and utilised, and what this means for the actors involved in the process. The book complements work by prominent Science and Technology Studies scholars such as Nickolas Rose, Annemarie Mol, Steve Epstein, Troy Duster, and Alondra Nelson. It is of interest to a wide range of audiences, and particularly given the focus on specific conditions (such as XXY Syndrome, 22q11.2DS and autism), it would be of great interest for those personally affected and directly involved in advocacy work in these areas."-- "Sociology of Health & Illness"
"Navon compellingly demonstrates--through archival research, bibliometrics, fieldwork at genetic disorders conferences, and interviews--the ways in which genomic designation not only adds new information to the existing categories (e.g., the identification of Trisomy 21 mutation in Down syndrome), but also creates entirely new categories (e.g., 22q11.2DS). . . . This typology, and the detailed analysis of the specific category of genomic designation, will be of interest to scholars in autism studies, rare diseases studies, disability studies, and the social studies of science and medicine more broadly. . . . Compelling not only for the explication of genomic designation itself, but also for what it highlights about the absence of genomic designation in other conditions. These contrasts demonstrate that genetics are not destiny, and that there is not one destiny for genetics. Overall, Mobilizing Mutations provides an ambitious theoretical framework with the possibility to pull genetic researchers, clinicians, and social scientists into conversations through detailed case studies strongly informed by both genetic science and social science."-- "Medical Anthropology Quarterly"
"Navon elegantly integrates information from diverse media to examine shifting narratives about human biodiversity. Mobilizing Mutations will be an engaging read for anyone interested in the history of science and genomics, while offering students of the molecular basis of human disease a new perspective on the societal context of their work. . . . Recommended."-- "CHOICE"

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