Prenatal Diagnosis in France: Between Regulation of Practices and Professional Autonomy

Author:

Ville Isabelle

Abstract

Prenatal diagnosis (PND) was introduced in France in the 1970s on the initiative of medical researchers and clinicians. For many years the regulation of practices was self-imposed, decentralised and idiosyncratic. The advent of ‘therapeutic modernity’ in the 1990s gave rise to an ethical, legal and scientific framework designed to homogenise PND at a national level, with the creation of multidisciplinary centres (CPDPN) and theAgence de la biomédecine. This article first recovers the history of PND in France. It then compares the activities of two CPDPNs, using ethnographic fieldwork and by analysing national quantitative data compiled by theAgence. It argues that the official policy of nationally homogeneous practices is not born out in practice, at the local level. This lack of homogeneity is most apparent in the number of authorisations for pregnancy termination due to foetal malformation, which varies considerably from one centre to another. Rooted in local culture, this variation relates to organisational methods, decision-making processes and variable levels of tolerance towards the risk of disability. Foetal medicine practitioners, thus, maintain a certain amount of autonomy that is collective rather than individual and that is reflected in the particular ‘identity’ of a given centre.

Publisher

Cambridge University Press (CUP)

Subject

History,Medicine (miscellaneous),General Nursing

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3. Microarray based comparative genomic hybridisation (array-CGH) detects submicroscopic chromosomal deletions and duplications in patients with learning disability/mental retardation and dysmorphic features

4. Prevalence is estimated at between one person in 300 and one person in 400: https://www.orpha.net/data/patho/Pub/fr/AgenesieIsoleeCorpsCalleux-FRfrPub447.pdf.

5. Known syndromes have been described on the basis of their clinical manifestations, taking their most severe forms. Studies of cohorts, costly and sometimes difficult to carry out due to the rarity of certain pathologies, are few in number and often outdated. While molecular genetics has made it possible to identify the less severe or asymptomatic forms of certain syndromes, practitioners’ representations often remain marked by the initial descriptions. Generally speaking, when they do exist, recent studies that deal with congenital anomalies (such as isolated agenesis of the corpus callosum and Klinefelter syndrome, for example) or with suspicious ultrasound signs (such as cervical cystic hygroma) report less severe consequences than those found in the past. However, recent studies report associations between certain chromosomal anomalies, such as Klinefelter syndrome, and forms of mental disorders: M. Cederlöf, A. Ohlsson Gotby, H. Larsson, E. Serlachius, M. Boman, N. Långström, M Landén and P. Lichtenstein, ‘Klinefelter Syndrome and Risk of Psychosis, Autism and ADHD’, Journal of Psychiatric Research, 48, 1 (2014), 128–30.

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