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Bioethics in human gene analysis and international view

人类基因分析中的生物伦理学和国际视野

基本信息

批准号：
16590264
负责人：
FUJIKAWA Kazuo
金额：
$ 1.73万
依托单位：
Kink University
依托单位国家：
日本
项目类别：
Grant-in-Aid for Scientific Research (C)
财政年份：
2004
资助国家：
日本
起止时间：
2004 至 2005
项目状态：
已结题

来源：
https://kaken.nii.ac.jp/en/grant/KAKENHI-PROJECT-16590264/
关键词：
Gene analysis Bioethics Genetic counseling human genetics Atomic bomb survivors Biotechnology Radiation Genotoxicity 原爆二世

项目摘要

Objective :The law for protection of personal information was enforced on April 1, 2005. Collection and analysis of genetic information should be carried out according to this law. Genetic information is definitely "personal" and researches with genetic information should be carefully planned and performed. We asked several medical and research institutions for rules and regulations related to this new law. For international comparison, information concerning bioethics in China was collected. Experimental work also was carried out using biotechnology for gene analysis in humanResults and discussion :The new law was carefully and extensively discussed in all institutes surveyed. Institutional ethics committees decided to follow the law and regulation for anonymity was strictly enforced in all institutions surveyed. Institutions receiving human materials not directly from human subjects are particularly careful to receive anonymized materials only. Computers analyzing genetic data are not connected to telephone lines. Such off-line handling of genetic data has been taken care of in all institutions surveyed. In China, several books on genetic counseling have been published. This is very impressive as bioethics was essentially non-existing in China until about 10 years ago. In our new graduate course for genetic counseling at Kinki University, we established a bioethics committee, in accordance with the personal information protection law. Such consideration was also applied for the survey of atomic bomb survivors.

目的：个人信息保护法于2005年4月1日生效。遗传信息的收集和分析应当依照本法进行。遗传信息绝对是“个人的”，对遗传信息的研究应仔细规划和执行。我们向几家医疗和研究机构询问了与这项新法律有关的规则和条例。为了进行国际比较，收集了中国生物伦理学方面的信息。实验工作也进行了使用生物技术的基因分析在人类结果和讨论：新的法律进行了仔细和广泛的讨论，在所有研究所调查。机构伦理委员会决定遵守法律和法规，在所有接受调查的机构中严格执行匿名规定。接收非直接来自人类受试者的人类材料的机构特别注意只接收匿名材料。分析基因数据的计算机没有连接到电话线。在接受调查的所有机构中，都采取了这种离线处理遗传数据的做法。在中国，已经出版了几本关于遗传咨询的书。这是非常令人印象深刻的，因为直到大约10年前，生命伦理学在中国基本上是不存在的。在近畿大学开设的遗传咨询研究生课程中，根据个人信息保护法，成立了生命伦理委员会。对原子弹爆炸幸存者的调查也采用了这种考虑。