Vailly Joëlle
Inserm, Institut de Recherche Interdisciplinaire sur les enjeux Sociaux (Iris), CNRS, EHESS, Université Paris 13, 74 rue Marcel Cachin, F-93017 Bobigny, France.
Soc Sci Med. 2008 Jun;66(12):2532-43. doi: 10.1016/j.socscimed.2008.02.010. Epub 2008 Mar 20.
Developments in biomedicine have remodelled the time-honoured questions of how to define the normal and the connection between the normal and the norm. This article deals with the expansion of the idea of abnormality through a study of the practices involved in neonatal screening for cystic fibrosis in France. It is based on observations made at meetings between paediatricians and geneticists involved in the screening programme, and a seven-month study in a tertiary care centre for cystic fibrosis. On one hand, the study highlights the technical limitations of screening, which have the effect of expanding biological abnormality. On the other, it deals with the rationales and associated practices used by health care professionals for paediatric monitoring that are behind the expansion of clinical abnormality. Lastly, the consequences of those practices are analysed at the point where neonatal screening and prenatal diagnosis meet, showing how the biomedical norm, with respect to foetuses, is altered. The political and moral space in which this development has occurred is discussed.
生物医学的发展重塑了那些由来已久的问题，即如何界定正常以及正常与规范之间的联系。本文通过对法国囊性纤维化新生儿筛查所涉及的实践进行研究，探讨了异常观念的扩展。它基于对参与筛查项目的儿科医生和遗传学家之间会议的观察，以及在一家三级囊性纤维化护理中心进行的为期七个月的研究。一方面，该研究突出了筛查的技术局限性，这些局限性导致了生物异常范围的扩大。另一方面，它探讨了医疗保健专业人员在儿科监测中所采用的基本原理及相关实践，这些是临床异常范围扩大背后的原因。最后，在新生儿筛查与产前诊断交汇之处分析了这些实践的后果，展示了针对胎儿的生物医学规范是如何被改变的。文中还讨论了这一发展所发生的政治和道德空间。
