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

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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).