1st Edition
The Birth of a Genetics Policy Social Issues of Newborn Screening
By Joëlle Vailly
Copyright 2013
240 Pages
by
Routledge
240 Pages
by
Routledge
240 Pages
by
Routledge
Also available as eBook on:
Testing for genetic diseases or traits is a rapidly developing practice, the most widely used form of testing currently in use being newborn screening. Based on a five-year research project and winner of the Prix ’Le Monde’ for academic research in France, The Birth of a Genetics Policy analyses the three dimensions - scientific, political and moral - of the social issues raised by a policy of... Read more
Introduction; Chapter 1 The Birth of a Screening Policy (Brittany-France); Chapter 2 On Scientific Grounds; Chapter 3 Governing; Chapter 4 Extending Abnormality; Chapter 5 Living with the Disease; Chapter 6 Maintaining a Quality Life; Chapter 7 Conclusion;
Biography
Joëlle Vailly is Senior Researcher at the National Institute for Health and Medical Research (Inserm) and at the research center ’Interdisciplinary Research Institute on Social Issues’ (Iris), France.
Classified as 'Research Essential' by Baker & Taylor YBP Library Services A Yankee Book Peddler UK Core Title for 2013 ’Combining her knowledge of genetics as both a biologist and an anthropologist, Joëlle Vailly vividly analyses the scientific and moral issues raised by the national screening of cystic fibrosis in France and provides a masterful reflection on a contemporary biopolitics that redraws the boundary between the normal and the pathological.’ Didier Fassin, Institute for Advanced Study, Princeton, USA ’This timely volume is a superb account of the political struggles, scientific uncertainties, and human anxieties that surround the establishment of a newborn genetic screening program for cystic fibrosis in France. Grounded in Foucault’s concept the field of experience, Vailly orchestrates a cacophony of voices - medical professionals, families, advocacy groups, and policy makers - that create a new moral space associated with quality life.’ Margaret Lock, McGill University, Montréal, Canada ’This is not yet another book on genetics, either warning against the insidious geneticisation of society or celebrating the scientific prowess of genetics. It rather offers an exceptionally detailed account on what it entails to make genetics the locus of ordinary health policies, and a thoughtful reflection on what it is to have genes as political objects inhabiting our lives.’ Vololona Rabeharisoa, Mines-ParisTech, France
