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知晓还是不知晓?基因无知、自主性与家长式作风。

To know or not to know? Genetic ignorance, autonomy and paternalism.

作者信息

Wilson Jane

机构信息

Centre for Professional Ethics, Keele Hall, Keele University, Staffordshire ST5 5BG, UK.

出版信息

Bioethics. 2005 Oct;19(5-6):492-504. doi: 10.1111/j.1467-8519.2005.00460.x.

Abstract

This paper examines some arguments which deny the existence of an individual right to remain ignorant about genetic information relating to oneself--often referred to as 'a right to genetic ignorance' or, more generically, as 'a right not to know'. Such arguments fall broadly into two categories: 1) those which accept that individuals have a right to remain ignorant in self-regarding matters, but deny that this right can be extended to genetic ignorance, since such ignorance may be harmful to others, particularly those to whom one is genetically related (the 'harm to others objection') and 2) those which contend that, even if genetic ignorance is only self harming, it is not something to which individuals can rationally or morally claim to have a 'right' at all, since they defend their claims on autonomy-respecting grounds and ignorance is inimical to autonomy (the 'incoherence objection'). I argue that defenders of a right not to know have some plausible responses to the 'harm to others objection', they and their opponents reach an impasse in which both sides are left voicing concerns about the paternalistic implications of the other's point of view. I conclude that defenders of a right not to know would, therefore, advance their position further by analysing it in terms of values other than those of autonomy and rights.

摘要

本文审视了一些反对个人有权对自身基因信息保持无知的观点——这种权利常被称为“基因无知权”,或更宽泛地称为“不知情权”。此类观点大致可分为两类:1)那些承认个人有权在关乎自身的事务上保持无知,但否认这项权利可扩展至基因无知的观点,因为这种无知可能对他人有害,尤其是与自己有基因关联的人(“对他人的危害异议”);2)那些认为,即便基因无知仅会伤害自身,但个人根本无法从理性或道德层面宣称对此拥有“权利”的观点,因为他们基于尊重自主性的理由来捍卫自己的主张,而无知与自主性相悖(“不连贯异议”)。我认为,不知情权的捍卫者对“对他人的危害异议”有一些合理的回应,他们与其反对者陷入了僵局,双方都对对方观点中家长式作风的影响表示担忧。我得出结论,因此,不知情权的捍卫者若从自主性和权利之外的其他价值观角度来分析这一立场,将能进一步推进其观点。

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