Publications | Ouvrages

	The Birth of a Genetics Policy

The Birth of a Genetics Policy

Social Issues of Newborn Screening

Joëlle Vailly
Ashgate,  [2013],  240 p.
Prix : 60,00 £ (website price : 54,00 £)

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 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.

Revealing the ties that exist between forms of biomedical knowledge and political techniques, whilst showing how the notion of biomedical abnormality is being extended, this book sheds light on judgements surrounding the idea of the ‘quality (of) life’. A rigorous examination of the discourses and practices of medical genetics in the early twenty-first century, The Birth of a Genetics Policy will appeal to sociologists and anthropologists with interests in medicine and the body, evidence-based care and questions of biopolitics and governmentality.



‘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


List of abreviations – Preface 


  • The importance of health issues and how those issues are evolving
  • An analytical framework
  • Screening newborns
  • Presentation of the study

1 - The birth of a screening policy (Brittany-France)

  • A Breton tale
  • History of a national debate

2 - On scientific grounds

  • When conviction prevails
  • Looking for evidence

3 - Governing

  • Power relations
  • Governing in time and space

4 - Extending abnormality

  • Techniques and biological abnormality
  • Managing uncertainty

5 - Living with the disease

  • Paediatric semantic networks
  • Social life and biological life

6 - Maintaining a quality life

  • Gaining time and passing time
  • The impact of newborn screening on prenatal diagnosis


References – Index 

ISBN : 978-1-4724-2272-9

The Birth of a Genetics Policy

Social Issues of Newborn Screening

Sorbonne Paris Nord

Bâtiment Recherche Sud
5 cours des Humanités
93322 Aubervilliers cedex

UFR SMBH 74 rue Marcel Cachin, 93017 Bobigny cedex



Liens rapides

Agenda interne

Twitter Iris

La Lettre de l'Iris

HAL - collection de l'Iris