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脊柱裂的母胎手术:关于西欧情况下伦理、法律和心理问题的一些思考。

Maternal-fetal surgery for myelomeningocele: some thoughts on ethical, legal, and psychological issues in a Western European situation.

作者信息

Van Calenbergh Frank, Joyeux Luc, Deprest Jan

机构信息

Department of Neurosurgery, University Hospitals Leuven, KU Leuven, Leuven, Belgium.

Academic Department Development and Regeneration, Cluster Organ Systems, Biomedical Sciences, Faculty of Medicine, KU Leuven, Leuven, Belgium.

出版信息

Childs Nerv Syst. 2017 Aug;33(8):1247-1252. doi: 10.1007/s00381-017-3446-6. Epub 2017 May 23.

Abstract

BACKGROUND

The results of the Management of Myelomeningocele Study (MOMS) randomized controlled trial have demonstrated that maternal-fetal surgery (MFS) for myelomeningocele (MMC) compared to postnatal MMC repair has clear neurological benefits for the child at 12 and 30 months of age. Level I evidence nevertheless does not provide answers to many questions in this delicate field. Since the beginning of 2012, our fetal center has been offering MFS for spina bifida aperta (SBA) to patients from different European and non-European countries, in a societal context where termination of pregnancy is the option chosen by most patients when being informed of this diagnosis.

METHODS

We aim to explore in this text some of the ethical, legal, and psychological issues that we have encountered.

RESULTS

For many of these questions, we do not have definite answers. A pregnant patient when diagnosed with a MMC fetus is a vulnerable subject. She needs to be referred to a highly specialized center with sufficient expertise in diagnosis and in all therapeutic options. Objective but compassionate counseling is of paramount importance. It is required that a multidisciplinary professional team obtains full voluntary consent from the mother after providing an appropriate information including diagnosis, short-, medium-, and long-term prognosis as well as benefits and harms of the fetal surgery.

CONCLUSION

The latter should be offered with full respect for maternal choice and individual assessment and perception of potential risks taking into consideration legislation in the fetal center and the parents' country legislation.

摘要

背景

脊髓脊膜膨出管理研究(MOMS)随机对照试验的结果表明,与出生后进行脊髓脊膜膨出(MMC)修复相比,胎儿期手术(MFS)对12个月和30个月大的儿童具有明显的神经学益处。然而,一级证据并未回答这个微妙领域中的许多问题。自2012年初以来,我们的胎儿中心一直在为来自不同欧洲和非欧洲国家的患者提供开放性脊柱裂(SBA)的胎儿期手术,在这样一个社会背景下,大多数患者在得知这一诊断后会选择终止妊娠。

方法

我们旨在本文中探讨我们遇到的一些伦理、法律和心理问题。

结果

对于其中许多问题,我们没有确定的答案。一名被诊断怀有脊髓脊膜膨出胎儿的孕妇是一个脆弱的个体。她需要被转诊到一个在诊断和所有治疗选择方面具有足够专业知识的高度专业化中心。客观但富有同情心的咨询至关重要。要求一个多学科专业团队在提供包括诊断、短期、中期和长期预后以及胎儿手术的益处和风险等适当信息后,获得母亲的完全自愿同意。

结论

提供后者时应充分尊重母亲的选择以及对潜在风险的个体评估和认知,同时要考虑胎儿中心的法规以及父母所在国家的法规。

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