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在日本医院的遗传数据治理
Mizuho Yamazaki Suzuki1,2, Yuko Ohnuki1,2, Kei Takeshita1,2
1Department of Medical Ethics, Tokai University School of Medicine, Isehara, Kanagawa Prefecture Japan.
Asian bioethics review
|June 26, 2023
概括
日本的医院在管理基因检测结果方面表现出多样化的方法,许多医院实施了访问限制. 这凸显了对处理敏感遗传信息的标准化做法和公共讨论的需要.
科学领域:
- 医疗信息学 医疗信息学
- 遗传学 是一个遗传学.
- 医疗保健管理的管理
背景情况:
- 基因检测已经从单基因疾病发展到更广泛的应用.
- 这种扩张需要仔细考虑遗传信息存储和医疗记录中的访问.
- 当前管理遗传数据的做法在医疗机构之间有很大差异.
研究的目的:
- 调查日本普通医院对遗传信息的管理情况.
- 调查对遗传检测结果的访问限制的实施情况.
- 了解基因信息处理与其他敏感医疗数据的比较.
主要方法:
- 一份问卷分发给了日本1037家通用临床培训医院.
- 从258家医院收到了回复,其中191家报告处理遗传信息.
- 根据医院的类型和规模,分析了关于访问限制和存储方法的数据.
主要成果:
- 在处理遗传信息的191家医院中,有112家实施了访问限制.
- 71家医院不执行对遗传信息的访问限制.
- 实践因机构类型,规模和临床遗传学部门的存在而有所不同.
结论:
- 在日本医院如何管理敏感的遗传信息方面存在很大的差异.
- 这些发现强调需要就存储遗传记录的标准化协议进行对话.
- 公共和专业讨论对于制定敏感数据管理的适当指南至关重要.
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