走向伦理来源追踪:GA4GH模型数据访问协议 (DAA)
Alexander Bernier1, Bartha Maria Knoppers2, Jonathan Lawson3
1University of Toronto, Faculty of Law, Falconer Hall, 84 Queens Park, Toronto, ON Canada.
概括
标准化基因组和健康数据的数据访问条款可以改善研究重复使用和机构合规性. 模式条款提高了管理人类基因组数据访问的行政效率.
科学领域:
- 基因组医学是基因组医学.
- 生物伦理学生物伦理学
- 卫生法 法律 卫生法
背景情况:
- 基因组和健康数据对于研究至关重要,但需要谨慎管理.
- 现有的数据访问协议存在很大差异,造成不一致.
- 为了负责任的数据管理和高效的重复使用,需要标准化.
研究的目的:
- 为获取基因组和健康数据制定标准化合同条款.
- 促进负责任的数据管理和高效的下游再利用.
- 提高数据管理中的行政效率和机构合规性.
主要方法:
- 对29个全球人类生物医学研究联盟的文件分析数据访问协议.
- 定性和比较法律分析方法.
- 综合常见的法律要素,制定模范条款,通过专家讨论进行细化.
主要成果:
- 识别数据访问协议中最常见的法律要素.
- 开发15个独特的数据访问条款模型.
- 对每个条款的法律立场和标准实践的描述.
结论:
- 模式条款可以简化行政流程,并确保对人类基因组数据访问的合规性.
- 机器可读的同意和软件对于可追溯的伦理来源是必要的.
- 在整个数据生命周期中,有效的数据使用条件通信至关重要.
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