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個人ゲノムと倫理的問題(法学的視点より) 個人ゲノム研究と生命倫理と法

机译:个人基因组和道德问题(来自律师观点)个人基因组研究和生活伦理和法律

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摘要

Whole-genome research projects, especially those involving whole-genome sequencing, tend to raise intractable ethical and legal challenges. In this kind of research, genetic and genomic data obtained by typing or sequencing are usually put in open or limited access scientific databases on the Internet to promote studies by many researchers. Once data become available on the Internet, it will be virtually meaningless to withdraw the information, effectively nullifying participants' right to revoke consent. Although the author favors the governance system that will assure research subjects of the right to withdraw their participation, considering these characteristics of whole -genome research, he finds those recommendations offered in Caulfield T, et al: Research ethics recommendations for whole-genome research: Consensus statement. PLoS Biol 6(3): e73 (2008), especially to the effect that the consent process should include information about data security and the governance structure and, in particular, the mechanism for considering future research protocols, well reasoned and acceptable.
机译:全基因组研究项目,尤其是涉及全基因组测序的项目,倾向于提高顽固的道德和法律挑战。在这种研究中,通过键入或排序获得的遗传和基因组数据通常在互联网上进行开放或有限的访问科学数据库,以促进许多研究人员的研究。一旦数据在互联网上获得,几乎毫无意义地撤销信息,有效地无效地拒绝参与者撤销同意。虽然作者有利于治理系统,以确保撤回参与的权利,考虑到这些全部研究的特征,虽然审查了全身研究的特点,但他发现了在Caulfield T,et at al的那些建议:研究伦理学的全基因组研究建议:共识声明。 PLOS BIOL 6(3):E73(2008),特别是同意过程应包括有关数据安全和治理结构的信息,特别是考虑未来研究方案的机制,合理的合理和可接受的影响。

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