刍议美国《2008年遗传信息反歧视法》及其启示  

A Tentative Study on American Genetic Information Nondiscrimination Act of 2008 and Its Implications

作　　者：黎志敏[1,2] 蒋川[3] 王萍[1] 

机构地区：[1]哈尔滨医科大学人文社会科学学院,黑龙江哈尔滨150081 [2]泸州医学院<医学与法学>编辑部,四川泸州646000 [3]四川警察学院公共外语教研室,四川泸州646000

出　　处：《医学与哲学（A）》2015年第3期12-15,共4页Medicine & Philosophy:Humanistic & Social Medicine Edition

基　　金：2014年四川省教育厅项目"人类基因技术背景下人格权保护研究";项目编号:14SB0111;2014年度泸州市社科联项目"现代基因科学的发展给人格权保护带来的挑战与对策研究";项目编号:LZ14A36;四川医事卫生法治研究中心课题"竞合论视域下的医药卫生法与生命法整合研究";项目编号:YF13-Z05

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.

关 键 词：遗传信息 反歧视法 立法原则 基因信息平等权 

分 类 号：R-05[医药卫生] D922.16[政治法律—宪法学与行政法学]