Institute for Bioethics & Health Humanities Events

Developing Metrics for Responsible Data Stewardship in Genomics

Elizabeth and Chauncey Leake Memorial Fund

Developing Metrics for Responsible Data Stewardship in Genomics

Speaker:
Vasiliki N. Rahimzadeh, PhD
Assistant Professor
Center for Medical Ethics and Health Policy

Oct. 10, 2024
Noon to 1 p.m.
Location: SHP/SON 1.304

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There is widespread acceptance that sharing genomic and related health data can advance our collective understanding of genetic/genomic etiologies of disease. Government research agencies make sharing scientific data stemming from funded projects a condition of that funding. The research community has been vocal about the need to make data participants altruistically contribute to research more findable, accessible, interoperable, and reusable. How do genomic data repositories track their own progress on such stewardship goals? What outcomes should be measured to ensure quality and effectiveness of data stewardship over time? In this talk, I provide preliminary findings from a scoping review of the literature aimed at developing a core outcomes list for responsible genomic data stewardship in the cloud. I discuss how new adaptations of a reliable method to measure data stewardship outcomes in environmental/climate science can be instructive for the human genomics community.

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Developing Metrics for Responsible Data Stewardship in Genomics
, 2024 - -
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