The Reconfiguration of the Relationship to Care for a Rare Disease

C. Langeard; G. Minguet; L. Gueganton; P. Cam; C. Faquet; P. Lombrail; G. Rault

The Reconfiguration of the Relationship to Care for a Rare Disease: Neonatal Expended Screening in a Socio-material Perspective

C. Langeard ¹ G. Minguet ^{2, 3} L. Gueganton ⁴ P. Cam ³ C. Faquet ³ P. Lombrail ⁴ G. Rault ⁴

1 GRANEM - Groupe de Recherche Angevin en Economie et Management

2 Mines Nantes - Mines Nantes

3 LEMNA - Laboratoire d'économie et de management de Nantes Atlantique

4 CRCM - Centre de Ressources et de Compétences de la Mucoviscidose

Abstract : Neonatal Screening (NBS) is a mass screening, secondary prevention policy aimed at detecting one or several often congenital disorders in all neonates in a given country. The French CF NBS programme is completely functional since the middle of 2003. Drawing its inspiration from the socio-material approach, this article advances a description and analysis of the interactions between the biomedical technologies used in neonatal cystic fibrosis screening and the resulting changes in clinical practice, the bioethical debate and finally in the interstice between voluntary individual consent to screening and the management of a population’s health. The analysis grid focuses on four dimensions: institutional, techno-scientific, regulatory and socio-professional. Backed up by a field survey conducted in the specialised healthcare centres, this study explores two major aspects of the repercussions of NBS: first, the genesis and institutionalisation of this public policy and the impact of a more flexible form of Evidence Based Medicine (EBM) and the sustained controversy on the neonatal screening programme uniting the community of cystic fibrosis paediatrics. This study suggests that institutional stability remains fragile and in this respect constitutes a paradoxical form of production with incompleteness and uncertainty as constituting factors.

Keywords : Neonatal Expended Screening

Document type :

Journal articles

Domain :

Humanities and Social Sciences / Sociology

Life Sciences [q-bio] / Santé publique et épidémiologie

Life Sciences [q-bio] / Ethics

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https://hal-mines-nantes.archives-ouvertes.fr/hal-01371528
Contributor : Guy Minguet <>
Submitted on : Tuesday, September 27, 2016 - 10:26:44 AM
Last modification on : Friday, May 10, 2019 - 12:44:02 PM
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