Implementation of an impact assessment tool to optimize responsible stewardship of genomic data in the cloud

实施影响评估工具以优化云中基因组数据的负责任管理

• 批准号: 10721762
• 负责人: Vasiliki Rahimzadeh
• 金额: $ 16.13万
• 依托单位: BAYLOR COLLEGE OF MEDICINE
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-01 至 2028-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10721762
• 关键词: Acceleration; Address; Algorithms; Assessment tool; Bioethics; Bioethics Consultants; Biomedical Research; Calibration; Clinical; Cloud Computing; Cloud Service; Committee Members; Communities; Competence; Complex; Computer software; Consensus; Data; Data Collection; Data Protection; Data Science; Data Scientist; Data Security; Data Set; Delphi Study; Development Plans; Engineering; Ensure; Environment; Ethnic Population; FAIR principles; Funding; Future; Genomic medicine; Genomics; Goals; Health; Health Policy; Human; Individual; Institution; Institutional Practice; International; Knowledge; Laws; Life Cycle Stages; Measures; Medical Ethics; Medical center; Mentored Research Scientist Development Award; Mentors; Methods; Modeling; National Human Genome Research Institute; Outcome; Outcome Measure; Output; Participant; Patients; Persons; Policies; Population; Privacy; Provider; Published Comment; Reporting; Research; Research Design; Research Personnel; Scientist; Secure; Security; Software Engineering; Strategic vision; Surveys; System; Technology; Testing; Time; Training; Translating; Woman; career; career development; cloud based; cognitive interview; computerized tools; data access; data infrastructure; data management; data privacy; data resource; data sharing; design; diverse data; ethical, legal, and social implication; evidence base; genome repository; genome resource; genomic data; health data; implementation tool; improved; innovation; interest; meetings; migration; novel; pilot test; precision medicine; preference; prevent; privacy preservation; public trust; racial minority population; repository; scale up; service providers; tool; trustworthiness; usability

PROJECT SUMMARY/ABSTRACT The goals of the proposed research address the NHGRI strategic vision of improving how publicly funded genomic repositories measure and report the impacts of their stewardship in novel computing environments. More genomic and related health data are generated than can be securely accessed and shared, preventing scientists’ ability to drive innovations that improve human health. New platforms powered by cloud technologies are transforming how repositories FAIRify data at scale, making data more findable, accessible, interoperable and reusable for otherwise compliant biomedical research. Moving repositories beyond regulatory compliance to responsible stewardship of public data resources means aligning institutional practices for data release with the values and interests of diverse stakeholders (e.g. data producers, users and contributors). The impacts of genomic data stewardship have been challenging to capture in the cloud so far because we lack understanding of what stewardship outcomes matter most to key stakeholders and how to measure these outcomes over time. It is expected that most largescale genomic data collections will soon migrate to the cloud. The time is now for developing a reliable tool that can track progress on genomic data stewardship ahead of these major infrastructural upgrades. The proposed K01 Mentored Research Scientist Development Award is designed to build Dr. Rahimzadeh’s foundational knowledge in privacy engineering and law, and to develop core competencies in impact assessment necessary to launch an independent research career at the nexus of genomics, bioethics and data science. Dr. Rahimzadeh is an applied bioethicist with scientific training in genomics. Her long-term career goal is to inform governance decisions which sustain public trust in and maximize the scientific value of genomic data resources across the research lifecycle. The integrated training and career development plan will be coordinated at the Center for Medical Ethics and Health Policy and leverages the expertise of an interdisciplinary team of bioethicists, genomic researchers, privacy engineers and data scientists. Dr. Rahimzadeh will partner with international data stewards responsible for managing genetically diverse data collections across repositories represented in the Global Alliance for Genomics and Health, H3Africa and the Native BioData Consortium to achieve the following specific aims: (AIM 1) Characterize essential outcomes and develop assessment criteria for genomic data stewardship in the cloud using a modified Delphi study design; Validate a stewardship impact assessment tool with experts in cloud infrastructure design (AIM2A) and pilot test the tool’s implementation with managers across cloud-native repositories (AIM2B).

项目摘要/摘要 拟议研究的目标涉及NHGRI的战略愿景，以改善公共资助方式 基因组存储库测量并报告其在新型计算环境中管理的影响。 生成的基因组和相关健康数据比可以安全访问和共享的更多相关健康数据，以防止 科学家推动改善人类健康的创新的能力。由云技术提供支持的新平台 正在转换存储库如何大规模铺平数据，从而使数据更加可访问，可访问，可互操作 并且可以重复使用其他符合的生物医学研究。将存储库放在监管合规之外 对公共数据资源负责任的管理意味着将数据释放的机构实践调整与 潜水员利益相关者（例如数据生产者，用户和贡献者）的价值和利益。影响 到目前为止，基因组数据管理的挑战是在云中捕获的挑战 管理结果对关键利益相关者以及如何随着时间的推移衡量这些结果而言最重要的。 预计大多数大型基因组数据收集将很快迁移到云中。现在是时候了 开发一个可靠的工具，可以在这些主要的主要方面跟踪基因组数据管理的进度 基础架构升级。拟议的K01指导研究科学家发展奖旨在 建立Rahimzadeh博士在隐私工程和法律方面的基础知识，并发展核心 在影响评估的能力中，需要在Nexus启动独立研究职业的必要能力 基因组学，生物伦理学和数据科学。 Rahimzadeh博士是一位应用生物伦理学家，并在科学培训中 基因组学。她的长期职业目标是告知治理决策，以维持公众信任和 在整个研究生命周期中最大化基因组数据资源的科学价值。综合培训 和职业发展计划将在医学伦理与健康政策中心协调 利用生物伦理学家，基因组研究人员，隐私工程师和 数据科学家。 Rahimzadeh博士将与负责管理的国际数据管家合作 全球基因组学和全球基因组联盟和 Health，H3africa和本地生物Atata联盟实现以下特定目标：（ AIM 1）表征 使用修改后的基因组数据管理的基本结果和开发评估标准 Delphi研究设计；验证云基础设施设计专家的管理影响评估工具 （AIM2A）和试点测试该工具在跨云代表存储库的经理（AIM2B）的实现。