D4I TDR team member Joseph Yracheta, MSc was a guest on “Public Health on Call”; a podcast that aims to create bite-sized stories surrounding public health topics.
Regarding TDR, Joseph shared how D4I TDR fits into the group of RADx projects. “For the most part those projects with their PIs and the tribal leadership behind him have been reluctant to share data with any sort of open database.” “One of the solutions was to put out a request for applications for a tribal data repository which was competitive and took more than two years to get funded.” Joseph explains that the project was finally funded and is a combined effort among Arizona State University, Ohio State University, NativeBio Data Consortium, University of California Santa Cruz, University of Washington, and University of Wisconsin.
Joseph then explains the main goals of the D4I TDR project. “We are all working towards mostly negotiating the ethical, legal, social, and data sharing agreements between tribes between themselves, intertribal, but also between the tribes and the federal government and outside researchers that want to access that data.” “It’s really trying to broker the relationship for this data, which is relatively low risk, in the hopes that high risk data like genomic information might be shared in a way that tribes feel comfortable, safe, and will receive the most benefit.”
You can find episode 843 – Nativebio Data Consortium: Data Sovereignty for Good here.
