Tracking Ethical Provenance for Sharing Genomic and Health Related Data

公共卫生意义。 全球基因组学与健康联盟：制定基因组学和健康相关数据的标准 共享有助于基因组研究和人类健康，为有效和 负责任地在世界各地的机构和国家之间共享数据。与政策发展相一致 以及GA4GH的技术工具构建精神，这一行政副刊将推进 人类基因组学中的伦理起源。它将创建一个新的GA4GH伦理种源亚组 致力于帮助生物医学研究人员持续记录、更新和激活道德条件 以尊重个人数据的价值和兴趣的方式重复使用基因组和相关的健康数据 贡献者和社区。

Public Health Significance. The Global Alliance for Genomics and Health: Setting the Standards for Genomics and Health-Related Data Sharing aids genomic research and human health by developing standards and policies for effective and responsible data sharing between institutions and countries around the world. In line with the policy development and technical tool-building spirit of the GA4GH, this administrative supplement will advance the novel concept of ethical provenance in human genomics. It will create a new Ethical Provenance Subgroup of the GA4GH dedicated to helping biomedical researchers consistently record, update, and activate the conditions of ethical data reuse of genomic and related health data in ways that respect the values and interests of individual data contributors and communities.