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对人类基因构成的理解与其相关知识之间的冲突。

The conflict of understanding the genetic make-up of man and his knowledge of it.

作者信息

Taupitz J

机构信息

Institut für Deutsches, Europäisches und Internationales Medizinrecht, Gesundheitsrecht und Bioethik der Universitäten Heidelberg und Mannheim, Schloss, D-68131, Mannheim, Germany.

出版信息

Forensic Sci Int. 2000 Sep 11;113(1-3):477-82. doi: 10.1016/s0379-0738(00)00196-1.

Abstract

The rapid development within the research of the human genome offers a great potential with regard to the diagnosis of genetic diseases but it also bears dangers of misuse. The starting point for avoiding these dangers is the autonomy of the individual, i.e. that the information about his genetic constitution should only be ascertained with his explicit consent. It is the duty of law to protect the individual and his relatives - who might also be concerned - without undermining the right to self-determination. Furthermore, it is discussed whether genetic tests should be limited to "health purposes" only. The problem of this limitation, however, is to define the term "health purposes" particularly when the criterion of "quality of life" is also taken into consideration. In order to assure a responsible handling of the genetic data, genetic analysis and especially the counselling of the subject should be reserved to the medical profession, since only a real understanding of the individual's genetic constitution with all risks and chances will enable him to make an informed and self-determined decision.

摘要

人类基因组研究的迅速发展为遗传疾病的诊断带来了巨大潜力,但也存在被滥用的风险。避免这些风险的出发点是个人的自主权,即只有在获得其明确同意的情况下,才能确定有关其基因构成的信息。法律有责任保护个人及其亲属(亲属也可能受到影响),同时又不损害其自决权。此外,人们还在讨论基因检测是否应仅限于“健康目的”。然而,这种限制的问题在于如何定义“健康目的”这一术语,尤其是在考虑“生活质量”标准时。为了确保对基因数据进行负责任的处理,基因分析,尤其是对受试者的咨询,应保留给医学专业人员,因为只有真正了解个体的基因构成以及所有风险和机遇,才能使他做出明智且自主的决定。

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