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患有唐氏综合征儿童的菲律宾父母对无创产前检测的态度。

Attitudes of Filipino parents of children with Down syndrome on noninvasive prenatal testing.

作者信息

de Castro-Hamoy Leniza G, Tumulak Ma-Am Joy R, Cagayan Maria Stephanie Fay S, Sy Peter A, Mira Nona Rachel C, Laurino Mercy Y

机构信息

Department of Pediatrics, College of Medicine, University of the Philippines Manila, Manila, Philippines.

Institute of Human Genetics, University of the Philippines Manila, Manila, Philippines.

出版信息

J Community Genet. 2022 Aug;13(4):411-425. doi: 10.1007/s12687-022-00597-w. Epub 2022 Jun 2.

DOI:10.1007/s12687-022-00597-w
PMID:35653002
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9161766/
Abstract

Globally, there has been an increasing uptake of noninvasive prenatal testing (NIPT). In the Philippines, the test is currently available through private laboratories and can be availed by families who can afford the out-of-pocket cost. In a country where elective termination of pregnancy is not an option, the question arises as to the relevance of this testing, even among health professionals. This is an exploratory qualitative study that explored the attitudes of Filipino parents of children with Down syndrome (DS) toward NIPT using thematic analysis of in-depth interviews. Study participants acknowledged the value of NIPT in providing early diagnosis and, subsequently, emotional, mental, spiritual, and financial preparation. This said, they also emphasized that such early detection may cause anxiety and even thoughts of termination for some, despite abortion being against the law and predominant religious beliefs. For those undergoing NIPT and receiving positive results, study participants highlighted the need to receive proper and nonbiased counseling from both health professionals and parents who have children with DS.

摘要

在全球范围内,非侵入性产前检测(NIPT)的应用越来越广泛。在菲律宾,目前通过私人实验室可以进行这项检测,有能力承担自付费用的家庭可以使用。在一个不允许选择性终止妊娠的国家,即使是在卫生专业人员中,这项检测的相关性也引发了疑问。这是一项探索性定性研究,通过对深入访谈进行主题分析,探讨了菲律宾唐氏综合征(DS)患儿父母对NIPT的态度。研究参与者认可NIPT在提供早期诊断以及随后进行情感、心理、精神和经济准备方面的价值。话虽如此,他们也强调,尽管堕胎违法且与主流宗教信仰相悖,但这种早期检测可能会给一些人带来焦虑甚至终止妊娠的想法。对于那些接受NIPT并得到阳性结果的人,研究参与者强调需要从卫生专业人员和患有DS患儿的父母那里获得适当且无偏见的咨询。

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