The Birth of a Genetics Policy: Social Issues of Newborn Screening

ISBN-13: 9781138279506 / Angielski / Miękka / 2016 / 240 str.

Joelle Vailly

Opis

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 screening for the genetic disease of cystic fibrosis amongst babies. Drawing on extensive interview material and observational research, it explores the conditions under which a screening policy is decided upon and implemented, the types of political logic underlying it, and the effects it has on norms and values.

Recenzje

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

Spis treści

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;

O autorze

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.