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Tracking Ethical Provenance for Sharing Genomic and Health Related Data

追踪共享基因组和健康相关数据的道德来源

基本信息

批准号：
10791228
负责人：
HEIDI L REHM
金额：
$ 22.63万
依托单位：
BROAD INSTITUTE, INC.
依托单位国家：
美国
项目类别：
财政年份：
2021
资助国家：
美国
起止时间：
2021-02-05 至 2026-01-31
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10791228
关键词：
Address Administrative Supplement Agreement Authorization documentation Bioethics Bioethics Consultants Case Study Collaborations Communication Communities Computer software Consent Country Data Data Collection Data Protection Data Provenance Data Set Dedications Development Elements Ensure Equity Ethics Future Genomics Goals Health Health Policy Human Individual Inequity Institution International Lawyers Legal Life Cycle Stages Manual Communication Measurable Mission Modeling Movement Ontology Policies Policy Developments Population Procedures Public Health Readability Research Research Personnel Resources Review Literature Risk Series Software Engineering Stream Subgroup Talents Time Transfer Agreement Update Work Work Ethic authority cost cost effectiveness data access data modeling data privacy data reuse data sharing data standards empowerment genome sciences genomic data health data human genomics improved innovation interest interoperability lens novel open source patient engagement remediation repository social social movement software development theories tool trustworthiness

项目摘要

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.

公共卫生意义。全球基因组学与健康联盟：为基因组学和健康相关数据制定标准通过制定标准和政策，在世界各地的机构和国家之间进行负责任的数据共享。根据政策发展和技术工具建设精神的GA4GH，这一行政补充将推进新的概念，人类基因组学的伦理起源它将创建一个新的GA4GH伦理种源小组致力于帮助生物医学研究人员不断记录，更新和激活道德条件，以尊重个人数据的价值和利益的方式重新使用基因组和相关健康数据贡献者和社区。