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与环境相关疾病的遗传易感性的伦理问题。

Ethical aspects of genetic predisposition to environmentally-related disease.

作者信息

Grandjean P, Sorsa M

机构信息

Institute of Community Health, Odense University, Denmark.

出版信息

Sci Total Environ. 1996 May 17;184(1-2):37-43. doi: 10.1016/0048-9697(95)04986-x.

Abstract

Some individuals are highly susceptible to disease caused by chemical exposures and this hypersusceptibility can be genetically determined. Because biomarker technology for the determination of genetic predisposition is at the disposal of researchers, the capability therefore exists to include genetic screening in epidemiologic studies. The application of this technological advance in population-based research is, however, fraught with ethical tensions heretofore unknown. Moral duties alone are of limited use in resolving these problems. Scientific documentation is almost always insufficient to clarify the exact nature of the ethical implications, and ways to deal with uncertainties arising as a result of information generated from genetic screening studies must be considered. The most important tensions relate to autonomy and the right to privacy, fairness and equality, while balancing potential public interest in paternalistic measures. Because no moral framework has been accepted for dealing with this technological advance, an ethical discourse in an open forum is required with all affected parties. Scientists alone, or any other group in isolation, should not expect to resolve these questions, but they should participate in and facilitate the process.

摘要

一些个体对化学物质暴露引起的疾病高度敏感,这种超敏感性可能由基因决定。由于研究人员可以使用用于确定遗传易感性的生物标志物技术,因此有能力将基因筛查纳入流行病学研究。然而,在基于人群的研究中应用这一技术进步充满了前所未有的伦理困境。仅靠道德责任在解决这些问题时作用有限。科学文献几乎总是不足以阐明伦理影响的确切性质,必须考虑应对基因筛查研究产生的信息所带来的不确定性的方法。最重要的困境涉及自主权和隐私权、公平和平等,同时要平衡家长式措施中潜在的公共利益。由于尚未接受用于应对这一技术进步的道德框架,因此需要在公开论坛上与所有受影响方进行伦理讨论。仅靠科学家或任何其他孤立的群体都不应期望解决这些问题,但他们应参与并推动这一过程。

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