Implementation of an Impact Assessment Tool to Optimize Responsible Stewardship of Genomic Data in the Cloud

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).  

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). 

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