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：保护个人信息的法律于2005年4月1日执行。应根据本法律进行遗传信息的收集和分析。遗传信息绝对是“个人”，应仔细计划和执行遗传信息的研究。我们向几家医学和研究机构询问了与该新法律有关的规则和法规。为了进行国际比较，收集了有关中国生物伦理学的信息。还使用生物技术进行了实验性工作，以进行人类和讨论中的基因分析：在所有调查的机构中，对新定律进行了仔细而广泛的讨论。机构伦理委员会决定在所有调查的机构中严格执行匿名的法律和法规。不直接从人类受试者接收人类材料的机构特别小心地仅收到匿名材料。分析遗传数据的计算机与电话线未连接。在所有调查的机构中，已经对遗传数据进行了这种离线处理。在中国，已经出版了几本有关遗传咨询的书。这是非常令人印象深刻的，因为直到大约10年前，生物伦理学本质上都是不存在的。在金基大学的新遗传咨询研究生课程中，我们根据个人信息保护法建立了一个生物伦理委员会。这种考虑也适用于原子弹幸存者的调查。