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Le consentement au dépistage néonatal ou les sujets ambigus de la génétique

Abstract : At a time when patients’ consent is one of the cornerstones of good medical practice, the notion of subjects’ autonomy in the field of genetic tests is posed still more acutely with the development of population screening. The situation in France has been interesting in this respect, since screening of all newborns for a genetic disease, cystic fibrosis, which include a written consent of parents (or mothers), was launched in 2002. In such a fine meshing of individualizing procedures (individual consent) and globalizing techniques (screening on a whole population), what exactly occurs in the intersection zone between the two? In this text, we analyse the way in which the “government” of screening, in the foucauldian sense, is transmitted locally in maternity wards. From a field study conducted by observations and interviews, first, we explain how information on screening is given to mothers and how their written consent is obtained. We then describe the logics of consent, and show that this is not simply a matter of informed consent, but also a formality of obviousness based on values and assumption. The political and moral space associated with this screening is discussed.
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https://halshs.archives-ouvertes.fr/halshs-02130439
Contributor : Joëlle Vailly <>
Submitted on : Wednesday, May 15, 2019 - 6:21:23 PM
Last modification on : Wednesday, October 14, 2020 - 4:05:20 AM

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Joëlle Vailly, Cécile Ensellem. Le consentement au dépistage néonatal ou les sujets ambigus de la génétique. Raison-publique.fr : arts, politique, société, Raison-Publique.fr, 2012, La bioéthique en débat, http://www.raison-publique.fr/article528.html. ⟨halshs-02130439⟩

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