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引用次数: 8

摘要

随着我们对人类基因组知识的不断增加,遗传学在医学上的价值一直在稳步发展。用于确定疾病风险或潜在药物效应的基因检测将变得更加普遍。随之而来的是对获取遗传信息的日益关注,以及对这些信息歧视性使用的可能性。目前,基因检测的范围和可预测性以及从遗传信息中公平得出的结论是有限的。尽管如此,公众对基于拥有遗传特征或条件的歧视的担忧是有据可查的。这种信息可能用于有关就业或保险的决定的前景引起了焦虑,并促使立法主要致力于使用有关个人基因型的信息,而不是一般的医疗信息。这些法律强调遗传信息不同于其他医学信息,并试图优先考虑遗传信息的利益。随着遗传信息和医学信息之间的区别变得站不住脚,那些将规范基因型信息使用的人将发现这种政策方法存在问题。在考虑立法作为管制遗传歧视的有效工具的局限性时,可以得出以下几个结论:首先,尽管基因组医学前景光明,但目前的知识不足以证明在非医学背景下使用或应用某些遗传信息是合理的;其次,公众基于对基因歧视的恐惧而对基因组医学的抵制构成了一种危险,这为政策应对提供了理由;第三,这样的回应可能纯粹是象征性的,而不是完全有效的,前提是该政策就遗传信息在非医学背景下的适用性建立了共识。
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Policy before practice: genetic discrimination reviewed.

The value of genetics in medicine has been steadily developing with our increasing knowledge of the human genome. Genetic testing to determine disease risk or potential drug effects is set to become more commonplace. With this comes increasing concern about access to genetic information, and the potential for discriminatory usage of such information. At present, the scope and predictability of genetic testing and the conclusions that may be drawn fairly from genetic information are limited. Nonetheless, public concerns about discrimination based on the possession of a genetic trait or condition are well documented. The prospect that such information might be used in decisions regarding employment or insurability has caused anxiety and prompted legislation largely dedicated to the use of information about one's genotype rather than medical information in general. These laws emphasize genetic information as distinct from other medical information and attempt to prioritize interests in genetic information. As the distinction between genetic and medical information becomes untenable, those who would regulate the use of genotypic information will find this approach to policy problematic.In considering the limits of legislation as an effective tool of regulating genetic discrimination, several conclusions can be drawn: firstly, despite the promise of genomic medicine, current knowledge is insufficient to justify the use or application of certain genetic information in nonmedical contexts; secondly, public resistance to genomic medicine that is based on fear of genetic discrimination poses a danger that justifies a policy response; and thirdly, such a response may be purely symbolic and not entirely effective, provided that the policy establishes a consensus regarding the applicability of genetic information in nonmedical contexts.

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