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理论与实践中的生物伦理概念:冰岛产前筛查的探索性研究。

Bioethical concepts in theory and practice: an exploratory study of prenatal screening in Iceland.

作者信息

Gottfreðsdóttir Helga, Arnason Vilhjálmur

机构信息

Department of Midwifery, Faculty of Nursing, University of Iceland, Eiríksgata 34, IS-101, Reykjavík, Iceland.

出版信息

Med Health Care Philos. 2011 Feb;14(1):53-61. doi: 10.1007/s11019-010-9291-y.

Abstract

A hallmark of good antenatal care is to respect prospective parent's choices and provide information in a way that encourages their autonomy and informed decision making. In this paper, we analyse the meaning of autonomous and informed decision making from the theoretical perspective and attempt to show how those concepts are described among prospective parents in early pregnancy and in the public media in a society where NT screening is almost a norm. We use interviews with Icelandic prospective parents in early pregnancy (N = 40) and material covering the discourse around prenatal screening in the media over 5 years period. Our analysis indicates that both prospective parents and the public media include ethical terms in their rhetoric around prenatal screening although those concepts differ in their expression. We conclude that the context in which these decisions are taken does not encourage moral reflection. Prospective parents describe that there is a lack of dialogue with professionals when decisions are made about screening. With routine offer of screening the conceptualization of bioethical concepts finds its own way through a mainstream discourse which has limited connections to the theoretical notions. This has been neglected in the implementation of screening, as limited effort has been subject to audit with reference to explore how the offer of screening and informed choice is experienced among prospective parents.

摘要

优质产前护理的一个标志是尊重准父母的选择,并以鼓励他们自主和做出明智决策的方式提供信息。在本文中,我们从理论角度分析自主和明智决策的含义,并试图展示在一个几乎将NT筛查视为常态的社会中,这些概念在早孕准父母和大众媒体中是如何被描述的。我们对冰岛早孕准父母进行了访谈(N = 40),并收集了5年期间媒体上有关产前筛查的话语资料。我们的分析表明,准父母和大众媒体在围绕产前筛查的言辞中都包含伦理术语,尽管这些概念在表达方式上有所不同。我们得出结论,做出这些决策的背景并不鼓励道德反思。准父母表示,在做出筛查决策时,与专业人员缺乏对话。随着筛查的常规提供,生物伦理概念的概念化通过一种与理论概念联系有限的主流话语找到了自己的方式。这在筛查的实施中被忽视了,因为在探索准父母如何体验筛查提供和知情选择方面,进行审计的努力有限。

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