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“不知道某些事情是否更好?”:对接受过无创性产前检测的女性对其未来可能应用的看法。

'Is it better not to know certain things?': views of women who have undergone non-invasive prenatal testing on its possible future applications.

机构信息

Murdoch Children's Research Institute, Parkville, Victoria, Australia.

Faculty of Medicine, Nursing and Health Sciences, Monash University, Clayton, Victoria, Australia.

出版信息

J Med Ethics. 2019 Apr;45(4):231-238. doi: 10.1136/medethics-2018-105167. Epub 2019 Jan 24.

DOI:10.1136/medethics-2018-105167
PMID:30679192
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6582742/
Abstract

Non-invasive prenatal testing (NIPT) is at the forefront of prenatal screening. Current uses for NIPT include fetal sex determination and screening for chromosomal disorders such as trisomy 21 (Down syndrome). However, NIPT may be expanded to many different future applications. There are a potential host of ethical concerns around the expanding use of NIPT, as examined by the recent Nuffield Council report on the topic. It is important to examine what NIPT might be used for before these possibilities become consumer reality. There is limited research exploring views of women on possible future uses of NIPT, particularly those of women who have undergone NIPT. In this study, we examined the views of women who undertook NIPT previously on the acceptability of and interest levels in using NIPT for a number of current and possible future applications. These included several medical conditions encompassing psychiatric, neurodevelopmental and adult-onset conditions as well as non-medical traits such as intelligence. One thousand women were invited to participate and 235 eligible surveys were received. Women generally reported an interest in using NIPT for medical conditions that severely impacted quality of life and with an onset earlier in life and stressed the importance of the accuracy of the test. Concerns were raised about the use of NIPT for non-medical traits. Respondents indicated that termination of pregnancy was not their only reason for testing, particularly in the case of sex. These results can further inform the ethical debate around the increasing integration of NIPT into healthcare systems.

摘要

非侵入性产前检测(NIPT)处于产前筛查的前沿。NIPT 的当前用途包括胎儿性别鉴定和筛查染色体疾病,如 21 三体(唐氏综合征)。然而,NIPT 可能会扩展到许多不同的未来应用。正如最近的 Nuffield 理事会关于该主题的报告所审查的那样,NIPT 用途的扩大带来了一系列潜在的伦理问题。在这些可能性成为消费者现实之前,重要的是要研究 NIPT 可能用于哪些方面。关于 NIPT 未来可能用途的女性观点的研究有限,特别是那些已经接受过 NIPT 的女性的观点。在这项研究中,我们调查了之前接受过 NIPT 的女性对 NIPT 用于当前和未来一些可能应用的可接受性和兴趣水平的看法。这些应用包括涵盖精神、神经发育和成人发病的多种医疗状况以及非医疗特征,如智力。邀请了 1000 名女性参与,收到了 235 份符合条件的调查。女性普遍表示有兴趣将 NIPT 用于严重影响生活质量的医疗状况,并且希望该检测能够尽早发现疾病,并强调了检测准确性的重要性。对于 NIPT 在非医疗特征方面的应用存在一些担忧。受访者表示,终止妊娠并不是她们进行检测的唯一原因,特别是在性别鉴定方面。这些结果可以进一步为围绕 NIPT 越来越多地融入医疗保健系统的伦理辩论提供信息。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/85d7/6582742/57ddc24e04be/medethics-2018-105167f03.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/85d7/6582742/c23685ab8dfa/medethics-2018-105167f01.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/85d7/6582742/8adce44b0f17/medethics-2018-105167f02.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/85d7/6582742/57ddc24e04be/medethics-2018-105167f03.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/85d7/6582742/c23685ab8dfa/medethics-2018-105167f01.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/85d7/6582742/8adce44b0f17/medethics-2018-105167f02.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/85d7/6582742/57ddc24e04be/medethics-2018-105167f03.jpg

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