Our lab has recently started a collaboration with the Native Biodata Consortium, Arizona State University, the Ohio State University, and the National Institute of Health through Stanford University to help create and run the Rapid Acceleration of Diagnostics (RADx) Tribal Data Repository (TDR): Data for Indigenous Implementation, Interventions, and Innovations (D4I). This project is not only innovative but also extremely important as the COVID-19 pandemic has and continues to disproportionately affect American Indian and Alaska Native communities. As the COVID-19 Pandemic struck and propelled the nation into chaos, tribes were approached about taking part in COVID-19 projects. Through this, a lot of data was collected in the moment around an imminent health threat, which has led to an issue of that data existing under federal control. This emerging issue requires a team to manage it appropriately for the benefit to be directed back to the tribes instead of prioritizing researcher interest. Additionally, Indigenous data sovereignty is critically needed globally for Indigenous data to be used primarily by Indigenous peoples and for Indigenous community benefit. This project is a large step in the direction of community alignment and ethical scientific justice. The UW-Madison team handles implementing data access and governance structures for the project, as well as implementing the secondary data storage site here at UW-Madison. Sakiah Perez Rivera joined the Anderson Genetics Laboratory in February as the RADx TDR Research Program Coordinator. This project has been a way for her to meld together her scientific and social justice backgrounds into work that will further scientific justice in Indigenous communities. Dan Rosenberg joined the Anderson Genetics Laboratory in March as the RADx TDR Data Center Coordinator. His focus on data security and ability in managing a wide variety of data sets in various contexts will be invaluable as we launch and run the secondary storage server and provide an extra layer of protection for the RADx TDR data.
For any questions on this project, reach out to the Project Coordinator, Sakiah Perez Rivera at marksrivera@wisc.edu