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设计导致的残疾:为通过植入前基因诊断选择未来子女的父母权威进行辩护及加以限制

Disabled by Design: Justifying and Limiting Parental Authority to Choose Future Children with Pre-Implantation Genetic Diagnosis.

作者信息

Stramondo Joseph

出版信息

Kennedy Inst Ethics J. 2017;27(4):475-500. doi: 10.1353/ken.2017.0039.

Abstract

Often, ethical analysis of Pre-Implantation Genetic Diagnosis occupies one of two positions in a moral dichotomy. On the one hand, we have a deep suspicion of the technology as directly leading to eugenics, which is assumed to be a negative consequence; and on the other, we have a vigorous enthusiasm for the technology as a means toward creating better offspring, where "better" is assumed to mean, at minimum, non-disabled. For my part, I eschew both of these positions and attempt to break this dichotomy wide open by maintaining that future parents are not morally required to use PGD to select some vision of an objectively "best" child, but should be permitted to use PGD to select embryos according to their own conception of the good life, even if that conception of the good life includes disability. Yet, I still would not argue that any use of PGD to select a future child to correspond with a particular view of the good life is morally permissible and so we need some way to identify which conceptions of the good life ought to be allowed to motivate prenatal selection without defaulting to a flawed concept of disability as a convenient measuring stick. To achieve this, I will invite moral judgments regarding a future child's likely range of life opportunity that would result from her parents' acting according to their conception of the good life in the context within which she will be raised. However, I reject the notion that this opportunity range should itself be defined only in terms of a socially decontextualized, purely medicalized conception of disability that is so often defined in terms of species normal functioning, so as to be considered equal or normal. Instead, an acceptable opportunity range should include a variety of modes of functioning that can contribute to a broad enough opportunity range if they are reasonably accommodated. In summary, this paper attempts to carve out a position that acknowledges the danger of PGD encouraging simplistic, stigma-based reproductive decision making while also justifying parents' use of PGD to choose embryos that will develop into children with and without disabilities who will flourish in the context in which they are raised.

摘要

通常,对植入前基因诊断的伦理分析在道德二分法中占据两个立场之一。一方面,我们对该技术深感怀疑,因为它被认为会直接导致优生学,而优生学被假定为一种负面后果;另一方面,我们对该技术充满热情,将其视为创造更优秀后代的一种手段,这里的“更优秀”至少被假定为意味着非残疾。就我而言,我摒弃这两种立场,并试图打破这种二分法,主张未来的父母在道德上没有义务使用植入前基因诊断来选择某种客观上“最佳”孩子的愿景,而应该被允许根据他们自己对美好生活的构想使用植入前基因诊断来选择胚胎,即使这种美好生活的构想包括残疾。然而,我仍然不会认为任何使用植入前基因诊断来选择未来孩子以符合特定美好生活观的行为在道德上都是允许的,所以我们需要某种方法来确定哪些美好生活观应该被允许促使产前选择,而不会默认使用有缺陷的残疾概念作为一个方便的衡量标准。为了实现这一点,我将邀请人们对未来孩子可能的生活机会范围进行道德判断,这种机会范围将由她的父母在她成长的环境中根据他们对美好生活的构想行事而产生。然而,我拒绝这样一种观念,即这种机会范围本身应该仅仅根据一种脱离社会背景、纯粹医学化的残疾概念来定义,这种概念常常根据物种的正常功能来定义,以便被视为平等或正常。相反,一个可接受的机会范围应该包括各种功能模式,如果这些模式得到合理的适应,就可以促成足够广泛的机会范围。总之,本文试图确立一种立场,既承认植入前基因诊断鼓励基于简单化、污名化的生殖决策的危险,同时也为父母使用植入前基因诊断来选择将发育成残疾和非残疾儿童、并在成长环境中茁壮成长的胚胎提供正当理由。

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