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 拟议研究的目标解决了NHGRI的战略愿景，即改善公共资金如何 基因组库测量和报告它们在新的计算环境中的管理的影响。 生成的基因组和相关健康数据比可以安全访问和共享的数据多， 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 正在改变存储库如何大规模公平化数据，使数据更易于查找、访问和互操作 并且可重复使用以用于其他符合要求的生物医学研究。使存储库超越法规遵从性 负责任地管理公共数据资源意味着将数据发布的机构实践与 不同利益攸关方（如数据生产者、用户和贡献者）的价值观和利益。的影响 到目前为止，基因组数据管理在云中捕获一直具有挑战性，因为我们缺乏了解， 什么样的管理结果对关键利益相关者最重要，以及如何随着时间的推移衡量这些结果。 预计大多数大规模的基因组数据收集将很快迁移到云端。现在是时候 开发一种可靠的工具，可以在这些重大事件发生之前跟踪基因组数据管理的进展， 基础设施升级。拟议的K 01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，并开发核心 在影响评估的能力，必要的发起一个独立的研究生涯的联系， 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， 基因组学她的长期职业目标是为维持公众信任的治理决策提供信息， 在整个研究生命周期中最大限度地发挥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和卫生政策中心协调， 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博士将与国际数据管理员合作， 在全球基因组学联盟代表的知识库中收集基因多样性数据， 健康、H3非洲和本土生物数据联盟，以实现以下具体目标：（目标1） 基本成果，并使用修改后的 德尔菲研究设计;与云基础架构设计专家一起使用的管理影响评估工具 （AIM 2A），并与跨云原生存储库（AIM 2B）的管理人员一起对该工具的实施进行试点测试。