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唐氏综合征的胎儿治疗:伦理探索

Fetal therapy for Down syndrome: an ethical exploration.

作者信息

de Wert Guido, Dondorp Wybo, Bianchi Diana W

机构信息

Department of Health, Ethics & Society, School for Oncology and Developmental Biology (GROW), School for Public Health and Primary Care (CAPHRI), Maastricht University, Maastricht, The Netherlands.

Mother Infant Research Institute, Tufts Medical Center and Tufts University School of Medicine, Boston, MA, US.

出版信息

Prenat Diagn. 2017 Mar;37(3):222-228. doi: 10.1002/pd.4995. Epub 2017 Feb 1.

Abstract

BACKGROUND

Parallel to recent advances in prenatal screening for Down syndrome (DS), therapies for different aspects of the condition have become available. As intellectual disability is a key aspect, this is an active area for research. Several groups have hypothesized that prenatal interventions will give better chances at improving cognitive functioning in persons with DS than postnatal treatment. Clinical trials are being developed.

METHOD

We first discuss the ethical pros and cons of trying to improve cognitive functioning in persons with DS to see if there are categorical objections to the general idea, and then move on to explore ethically relevant aspects of the prospect of developing fetal therapy for DS (FTDS).

RESULTS

Only on the basis of a one-dimensional emphasis on the social model of disability would (fetal) therapy aimed at cognitive improvement be inherently problematic.

CONCLUSIONS

Inviting pregnant women to participate in FTDS-research should be based on adequate pre-clinical trials, as well as information aimed at avoiding the so-called 'therapeutic misconception'. Should FTDS be proven to be effective and safe, women carrying a fetus with trisomy 21 who have decided to continue the pregnancy may have a moral obligation to make use of this option. © 2016 John Wiley & Sons, Ltd.

摘要

背景

与唐氏综合征(DS)产前筛查的近期进展相并行,针对该病症不同方面的治疗方法已可供使用。由于智力残疾是一个关键方面,这是一个活跃的研究领域。几个研究小组推测,产前干预比产后治疗更有可能改善唐氏综合征患者的认知功能。临床试验正在开展。

方法

我们首先讨论试图改善唐氏综合征患者认知功能在伦理方面的利弊,以查看是否存在对这一总体想法的绝对反对意见,然后接着探讨开发唐氏综合征胎儿疗法(FTDS)前景中与伦理相关的方面。

结果

只有基于对残疾社会模式的一维强调,旨在改善认知的(胎儿)疗法才会在本质上存在问题。

结论

邀请孕妇参与FTDS研究应基于充分的临床前试验以及旨在避免所谓“治疗误解”的信息。如果FTDS被证明是有效且安全的,怀有21三体胎儿且已决定继续妊娠的女性可能有道义上的责任利用这一选择。© 2016约翰·威利父子有限公司。

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