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“这一终身承诺”:公众对残疾及无创产前基因检测的认知

"This lifetime commitment": Public conceptions of disability and noninvasive prenatal genetic screening.

作者信息

Steinbach Rosemary J, Allyse Megan, Michie Marsha, Liu Emily Y, Cho Mildred K

机构信息

Stanford Center for Biomedical Ethics, Stanford, California.

Biomedical Ethics Research Program and Center for Individualized Medicine, Mayo Clinic, Rochester, Minnesota.

出版信息

Am J Med Genet A. 2016 Feb;170A(2):363-374. doi: 10.1002/ajmg.a.37459. Epub 2015 Nov 14.

Abstract

Recently, new noninvasive prenatal genetic screening technologies for Down syndrome and other genetic conditions have become commercially available. Unique characteristics of these screening tests have reignited long-standing concerns about prenatal testing for intellectual and developmental disabilities. We conducted a web-based survey of a sample of the US public to examine how attitudes towards disability inform views of prenatal testing in the context of these rapidly advancing prenatal genetic screening technologies. Regardless of opinion toward disability, the majority of respondents supported both the availability of screening and the decision to continue a pregnancy positive for aneuploidy. Individuals rationalized their support with various conceptions of disability; complications of the expressivist argument and other concerns from the disability literature were manifested in many responses analyzed.

摘要

最近,用于唐氏综合征和其他遗传疾病的新型非侵入性产前基因筛查技术已投入商业使用。这些筛查测试的独特特性再次引发了人们对智力和发育障碍产前检测的长期担忧。我们对美国公众样本进行了一项基于网络的调查,以研究在这些快速发展的产前基因筛查技术背景下,对残疾的态度如何影响对产前检测的看法。无论对残疾持何种看法,大多数受访者都支持进行筛查以及继续怀有非整倍体检测呈阳性胎儿的决定。个体用各种残疾观念来合理化他们的支持;在许多分析的回答中都体现了表现主义论点的复杂性以及残疾文献中的其他担忧。

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