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一个线粒体的故事:线粒体替代、身份与叙事。

A Mitochondrial Story: Mitochondrial Replacement, Identity and Narrative.

作者信息

Scully Jackie Leach

出版信息

Bioethics. 2017 Jan;31(1):37-45. doi: 10.1111/bioe.12310.

Abstract

Mitochondrial replacement techniques (MRT) are intended to avoid the transmission of mitochondrial diseases from mother to child. MRT represent a potentially powerful new biomedical technology with ethical, policy, economic and social implications. Among other ethical questions raised are concerns about the possible effects on the identity of children born from MRT, their families, and the providers or donors of mitochondria. It has been suggested that MRT can influence identity (i) directly, through altering the genetic makeup and physical characteristics of the child, or (ii) indirectly through changing the child's experience of disease, and by generating novel intrafamilial relationships that shape the sense of self. In this article I consider the plausibility and ethical implications of these proposed identity effects, but I focus instead on a third way in which identity may be affected, through the mediating influence of the wider social world on MRT effects on identity. By taking a narrative approach, and examining the nature and availability of identity narratives, I conclude that while neither direct genetic nor indirect experiential effects can be excluded, social responses to MRT are more likely to have a significant and potentially damaging influence on the generation of MRT children's narratives of identity. This conclusion carries some implications for the collective moral responsibility we hold to ensure that MRT, if implemented, are practised in ethically justifiable ways.

摘要

线粒体替代技术(MRT)旨在避免线粒体疾病从母亲传给孩子。MRT是一项具有潜在强大力量的新生物医学技术,具有伦理、政策、经济和社会影响。引发的其他伦理问题包括对MRT出生的孩子及其家庭的身份,以及线粒体提供者或捐赠者可能产生的影响的担忧。有人认为,MRT可以通过改变孩子的基因构成和身体特征直接影响身份,或者通过改变孩子的疾病经历以及产生塑造自我意识的新的家庭内部关系间接影响身份。在本文中,我考虑了这些拟议的身份影响的合理性和伦理意义,但我转而关注身份可能受到影响的第三种方式,即更广泛的社会世界对MRT对身份影响的中介作用。通过采用叙事方法并审视身份叙事的性质和可得性,我得出结论,虽然直接的基因影响和间接的经验影响都不能排除,但社会对MRT的反应更有可能对MRT儿童身份叙事的形成产生重大且潜在的破坏性影响。这一结论对我们所承担的集体道德责任具有一些启示,即要确保如果实施MRT,应以符合伦理的合理方式进行。

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