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程序制定、选择和父母对接受新生儿足跟血筛查决定的反思。

Proceduralisation, choice and parental reflections on decisions to accept newborn bloodspot screening.

机构信息

Department of Epidemiology and Community Medicine, University of Ottawa, Ottawa, K1H 8M5, Canada.

出版信息

J Med Ethics. 2012 May;38(5):299-303. doi: 10.1136/medethics-2011-100040. Epub 2011 Dec 20.

Abstract

Newborn screening is the programme through which newborn babies are screened for a variety of conditions shortly after birth. Programmes such as this are individually oriented but resemble traditional public health programmes because they are targeted at large groups of the population and they are offered as preventive interventions to a population considered healthy. As such, an ethical tension exists between the goals of promoting the high uptake of supposedly 'effective' population-oriented programmes and the goal of promoting genuinely informed decision-making. There is, however, a lack of understanding with regard to how parents experience the tension between promoting uptake and facilitating informed choice. This paper addresses this issue, and data are presented to show how aspects of the timing, presentation of information and procedural routinisation of newborn screening serves to impact on the decisions made by parents.

摘要

新生儿筛查是指在新生儿出生后不久,对其进行各种疾病筛查的项目。这样的项目是针对个体的,但类似于传统的公共卫生项目,因为它们针对的是人口中的大部分群体,并作为预防性干预措施提供给被认为健康的人群。因此,在推广所谓的“有效”的面向人群的项目和促进真正知情决策的目标之间存在着伦理上的紧张关系。然而,人们对于父母如何体验促进参与和促进知情选择之间的紧张关系缺乏理解。本文探讨了这个问题,并提出了数据,表明新生儿筛查的时间安排、信息呈现和程序常规化的各个方面如何影响父母的决策。

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