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扩展型无创性产前检测(NIPT):儿童享有开放未来的权利能否为其划定范围?

Expanded Non-invasive Prenatal Testing (NIPT) : Can the Child's Right to an Open Future Help Set the Scope?

机构信息

Department of Public Health and Primary Care, Centre for Biomedical Ethics and Law, KU Leuven, Kapucijnenvoer 35/3 (box 7001), 3000, Leuven, Belgium.

Department of Development and Regeneration, Urogenital, Abdominal and Plastic Surgery, University Hospitals Leuven, Herestraat 49 (box 611), ON, 3000, Leuven, Belgium.

出版信息

J Bioeth Inq. 2023 Mar;20(1):41-49. doi: 10.1007/s11673-022-10222-7. Epub 2023 Jan 11.

Abstract

Expanded non-invasive prenatal testing (NIPT) has provoked ethical concerns about its justifiable scope. In this paper, we evaluate the role of the child's right to an open future in setting the scope of NIPT. This 'open future principle' has been cited in arguments both limiting and expanding parental freedoms. This moral right holds that adult autonomy rights which children cannot yet exercise should nonetheless be protected until they can. Its purpose is to protect the future autonomy of the child as a future adult. Several authors have extended this rationale from child to fetus. However, the right was not anticipated to apply to the fetus, a non-legal entity in many jurisdictions. The aim of this paper is to reconsider whether this principle is useful to help deliberate the scope of NIPT. We find that extending the open future principle to delineate the scope of NIPT is theoretically flawed. We contend that in the prenatal context its value primarily lies with counselling for prenatal screening where it can be used to encourage parents' reflection on the implications of knowing for the sake of knowing on their future children and their relationship with them.

摘要

扩展的非侵入性产前检测 (NIPT) 引发了其合理范围的伦理问题。在本文中,我们评估了儿童享有未来开放的权利在确定 NIPT 范围方面的作用。这一“未来开放原则”在限制和扩大父母自由的争论中都被引用过。这一道德权利认为,儿童目前无法行使的成年自主权利仍应受到保护,直至其能够行使为止。其目的是保护儿童作为未来成年人的未来自主性。一些作者已经将这一推理从儿童扩展到胎儿。然而,在许多司法管辖区,这一权利并不适用于胎儿,因为胎儿不是法律实体。本文的目的是重新考虑这一原则是否有助于审议 NIPT 的范围。我们发现,将未来开放原则扩展到 NIPT 的范围是有理论缺陷的。我们认为,在产前背景下,其价值主要在于产前筛查的咨询,它可以用于鼓励父母思考了解的意义,以便了解他们未来的孩子以及他们与孩子的关系。

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