I was multiple PI with Dr. Malia Fullerton on the NHGRI ELSI R21 grant, “Cloud-Based Biomedical Data Storage and Analysis: Implications for Trustworthy Governance” (R21HG011501, Dec 2020 – Nov 2022, NCE Dec 2022-Nov 2024).
Project Narrative
Precision medicine research increasingly relies on cloud-based platforms for the storage, sharing, and analysis of individual-level genomic, environmental, and linked health outcome data. To promote responsible and trustworthy data governance (i.e. decision-making about how biomedical data are stored, accessed, and used by researchers, as well as communicated to research participants) we will conduct an exploratory investigation of the policies, practices, and procedures associated with three such platforms: the BioData Catalyst (NHLBI), the Analysis, Visualization, and Informatics Lab-space or AnVIL (NHGRI), and the Research Hub (All of Us Research Program).
Publications
Dahlquist J.M., Nelson S.C., Fullerton S.M. Cloud-based biomedical data storage and analysis for genomic research: Landscape analysis of data governance in emerging NIH-supported platforms. HGG Adv. 2023 Apr 12;4(3):100196. doi: 10.1016/j.xhgg.2023.100196.
Posters/conference presentations
Nelson, S.C., Dahlquist, J., Fullerton, S.M. “Democratization and Cloud-Based Genomic Data Sharing: Views of Platform Developers and Early Adopters” (Poster). Presented at ELSI Congress, June 10, 2024.
Nelson, S.C., Dahlquist, J., Fullerton, S.M. “Exploring the ethical implications of genomic data sharing in cloud-based ecosystems: Views of developers and users” (Poster, PB2178). Presented at the American Society of Human Genetics Annual Meeting, October 26, 2022.
Nelson, S.C., Dahlquist, J., Fullerton, S.M. Dorothy, We’re Not in dbGaP Anymore: Emerging Cloud-Based Biomedical Data and Analysis Platforms and their Implications for Data Stewardship (Presentation). 5th ELSI Congress (virtual), June 2022.
Nelson, S.C., Dahlquist, J., Fullerton, S.M. “Cloud-based biomedical data storage and analysis for genomic research: landscape analysis of data governance in emerging NIH-supported platforms” (Poster). Presented at the American Society of Human Genetics Annual Meeting (Virtual), October 18, 2021.
Relevant blog posts