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The expansion of abnormality and the biomedical norm: neonatal screening, prenatal diagnosis and cystic fibrosis in France.

机译:异常的扩大和生物医学规范:法国的新生儿筛查,产前诊断和囊性纤维化。

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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.
机译:生物医学的发展重塑了久经考验的问题,即如何定义正常以及正常与规范之间的联系。本文通过研究法国针对囊性纤维化的新生儿筛查所涉及的实践,探讨了异常概念的扩展。它基于参与筛查计划的儿科医生和遗传学家在会议上的观察结果,以及在三级护理中心进行的为期7个月的囊性纤维化研究。一方面,这项研究突出了筛选的技术局限性,这些局限性具有扩大生物学异常的作用。另一方面,它处理了医疗保健专业人员用于儿科监测的基本原理和相关实践,这些理论和相关实践是临床异常现象扩大的背后。最后,在新生儿筛查和产前诊断相遇的时候对这些做法的后果进行了分析,显示了关于胎儿的生物医学规范是如何改变的。讨论了发生这种发展的政治和道德空间。

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