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L’expérience professionnelle du médecin hospitalier à l’épreuve du dépistage : : le cas de l’annonce du diagnostic de la mucoviscidose

Abstract : In what ways does biomedical technology such as systematic neonatal screening transform the process of announcing an incurable disease? This question is examined by means of a case study based on cystic fibrosis, a rare, lethal, genetically transmitted congenital disease with a variable and complex clinical expression and prognosis. In France, a systematic Neonatal Cystic Fibrosis Screening Programme (CF NBS) was instituted by the Public Authorities from 2002. This contribution aims at characterising the impact of neonatal screening on CF diagnosis through the announcement process. The study was conducted by questionnaire and interview among specialised care teams. The diagnosis is considered as a process; a sequence of events leading from presumption to proof that is progressively established during the course of the announcement process. This experience is examined from three different viewpoints: organisational, relational and technological. It reveals the paediatrician as orchestrator of the announcement process. In conclusion, the diagnostic process proves to be doubly revealing: the principle of clinical uncertainty in the diagnosis is shared by the parents, the neonate and the health professionals; the change in information content generated by 2/19 neonatal screening results in a reorganisation of consultation practices and alters the way disease is experienced.
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Submitted on : Wednesday, September 28, 2016 - 3:59:13 PM
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Chloé Langeard, Guy Minguet, Laetitia Guéganton, Pierre Cam, Christine Faquet, et al.. L’expérience professionnelle du médecin hospitalier à l’épreuve du dépistage : : le cas de l’annonce du diagnostic de la mucoviscidose. Revue française des affaires sociales, La documentation française, 2012, 2 (2-3), pp.80-102. ⟨hal-01373375⟩

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