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刍议美国《2008年遗传信息反歧视法》及其启示

     

摘要

现代遗传科学技术的迅速发展带来了个人基因信息泄密的可能,为了在维护人的尊严与促进基因技术发展之间寻求平衡,在简介美国《2008年遗传信息反歧视法》及其附属的相关伦理规范性文件内容的基础上,提出我国制定“基因技术法”的必要性。初步探讨了该法的立法目的,并提出需要在立法内容方面贯彻不伤害、知情同意、保护不知情权、尊重基因差异性、维护个人遗传信息机密性等原则,提出确立遗传信息的披露和保密制度、遗传信息平等权、社会救济制度以及发挥伦理审查委员会的监督职责等建议。%The rapid development of modern genetic information technology has brought in the possibility of breach of confidentiality .In order to balance preserving human dignity and promoting the development of genetic technology ,this paper put forward to formulate a Genetic Technology Act urgently based on the brief introduction of the Genetic Information Nondiscrimination Act of 2008 and its accessorial ethics normative documents .This paper made a preliminary discussion on the legislative intent of Genetic Technology Act ,pointing out some principles which should be implemented , such as do no harm ,informed consent ,protecting the right of not being informed of the results ,respecting the differences among genes ,maintaining the confidentiality of individual genetic information .This paper also proposed some suggestions like the establishment of genetic information disclosure and confidential system , the right to equality of genetic information ,social relief for the damage resulted from genetics research and utilization ,and the development of supervisory duty of institutional review board .

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