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人类基因组计划:对智障人士的考量

The Human Genome Project: considerations for people with intellectual disabilities.

作者信息

Holland A, Clare I C H

机构信息

Department of Psychiatry (Section of Developmental Psychiatry), University of Cambridge, Cambridge, UK.

出版信息

J Intellect Disabil Res. 2003 Oct;47(Pt 7):515-25. doi: 10.1046/j.1365-2788.2003.00530.x.

Abstract

The paper discusses the impact which recent advances in gene technology may have for people with intellectual disabilities. It highlights a conflict between the apparent benefits of advances in genetics for the population in general and the negative effects on persons with intellectual disabilities in particular. This conflict is illustrated in the paper through the use of examples, including the implications of a person's lack of capacity to consent to investigations and treatment; the issue of individual responsibility for antisocial behaviour when this is considered to have a genetic component; and the issue of life and death decisions about treatment in the face of a progressive, genetically determined, disorder. The authors adopt a human rights perspective to discuss these examples because it provides a richness to articulate and justify moral concerns in this area which is lacking in much of the current debate as this is dominated by the primacy of autonomy.

摘要

本文探讨了基因技术的最新进展可能对智障人士产生的影响。它突出了遗传学进展对普通人群的明显益处与对智障人士的负面影响之间的冲突。本文通过举例说明了这种冲突,包括一个人缺乏同意调查和治疗的能力所带来的影响;当反社会行为被认为有遗传因素时个人责任的问题;以及面对一种进行性的、由基因决定的疾病时关于治疗的生死抉择问题。作者采用人权视角来讨论这些例子,因为它为阐明和论证该领域的道德问题提供了丰富性,而这在当前许多由自主性至上主导的辩论中是缺乏的。

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