ELSIcon2022 Panel: Sharing Data: Speedbumps on the Translational Trail

ELSIcon2022 • Panel 10 • June 1, 2022

Kathryn Maxson Jones, Vasiliki Rahimzadeh, Kayte Spector-Bagdady, Robert Cook-Deegan

This panel features three talks by women researchers empirically studying how data are generated, stored, shared, accessed, and used, followed by an interactive panel discussion and audience participation. Each speaker will explore a different case in the information ecosystem that starts with data and aspires to advance knowledge and improve clinical care. The moderator will introduce the session with a 10-minute history of four ELSI projects that have applied qualitative and social science methods to explore how genomic data populate a knowledge commons, with insights that are now being applied to the kinds of data generated in the NIH BRAIN Initiative. This will set the stage for more detailed, 12-15-minute talks by the three empirical researchers on the following topics:

1. Challenges of Open Science: Beyond the Bermuda Principles, Lessons from History
2. Eurocentric database composition and institutional research incentives impede generalization to excluded populations3. Data Access Committees: Crucial Gatekeepers with Inconsistent Rules.