In a significant stride toward improving Indigenous health, the US National Institutes of Health has granted $9 million to establish the first tribal data repository led by Native scientists. This initiative, driven by Arizona State University (ASU) and other leading institutions, aims to tackle the stark health disparities amplified by the COVID-19 pandemic among Indigenous communities.
Central to this effort is Krystal Tsosie of ASU, a Diné/Navajo Nation member and co-founder of the Native BioData Consortium. Tsosie’s role involves navigating the ethical dimensions of data sharing and implementation, with a focus on building trust in genomics and data science within Indigenous communities.
The new RADx Tribal Data Repository: Data for Indigenous Implementations, involving six research awards, seeks to offer a more immediate response to the disproportionate impact of COVID-19 on tribal populations. This includes creating ethical frameworks for data sharing and analysis, with an emphasis on Indigenous perspectives and sovereignty.
Joseph Yracheta of NativeBio highlights the importance of this Indigenous-led initiative in revealing the true scale of COVID-19 disparities, often obscured due to underreporting. Matt Anderson, associate professor of medical genetics at the University of Wisconsin-Madison, stresses the importance of tribal sovereignty and responsible stewardship in the use of Indigenous data.
The project aligns with the NIH’s broader RADx-UP initiative, aiming to deepen understanding of COVID-19’s impact on American Indian and Alaska Native communities. It promises advancements in responsible data sharing, secure data storage, and community-focused health solutions, marking a pivotal moment for Indigenous health research and policy.
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