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NIH funds $9M Indigenous-led Tribal Data Repository partly housed at ASU

The Rapid Acceleration of Diagnostics (RADx) initiative, an NIH program launched three years ago to improve COVID-19 diagnostics, has awarded $9 million to support the first Indigenous-led Tribal Data Repository in the U.S.

“It's an absolutely beautiful way for not only respecting tribal data sovereignty, but also operationalizing that respect and giving us the exact resources that we need to be able to govern decisions related to health data and genomic data from our own peoples,” said ASU geneticist and bioethicist Krystal Tsosie, a member and citizen of the Navajo Nation.

The new RADx Tribal Data Repository: Data for Indigenous Implementations, Interventions and Innovations (RADx TDR D4I) spans six institutions, including ASU.

“Oftentimes, research data is taken from our community members, extracted, moved into institutions outside of our countries and communities — outside of our nations, into academic centers — and we never really see that data again,” said Tsosie. “And the question has always been, how is this actually benefiting our health interests?”

Tsosie will lead a $1.2 million sub-grant of RADx TDR D4I in which she will work with indigenous communities on developing ethical data sharing, analysis and usage standards consistent with tribal traditions and laws.

“So that we can start really directing these types of funds into our communities to lead the work that our community members feel like is of use to them, and really serving as advocates in this way,” she said.

Tsosie also co-founded the first U.S. Indigenous-led biobank, the Native BioData Consortium (NativeBio), which will act as an overall project leader.

“There had to be some sort of means to ensure that people that don't understand Native American issues aren't just gaining access to Native American samples and data to publish things that are harmful and not of use to Native Americans,” she said.

COVID was a wakeup call regarding health inequities in the U.S. and a stark reminder of the historical appropriation and misuse of biological samples and data from Indigenous communities.

Those communities were disproportionately affected by the pandemic, due to a combination of pre-existing health disparities, limited healthcare infrastructure and transportation, socioeconomic and cultural factors and logistical issues affecting vaccine distribution.

One of NativeBio’s early projects involved setting up tribal public health surveillance programs during the pandemic.

“What we learned is that many tribal nations were having to export their data to outside of the state for testing, and those results weren't being returned back to committee members until sometimes two weeks later,” said Tsosie.

She added that RADx TDR D4I will also contribute to building local STEM-based economies and help more young people in tribal communities see science as a possible career path.

“When we think of data as a resource — and also think that many of our natural resources have been stripped away from us and precluded our ability to make economies based off of other sources of capital — this is the power of bringing data back to our communities,” she said. “We can actually start providing job opportunities, training opportunities related to IT management and data management, AI approaches, laboratory positions that are situated in our communities. It's absolutely wonderful.”

Nicholas Gerbis joined KJZZ’s Arizona Science Desk in 2016. A longtime science, health and technology journalist and editor, his extensive background in related nonprofit and science communications inform his reporting on Earth and space sciences, neuroscience and behavioral health, and bioscience/biotechnology.Apart from travel and three years in Delaware spent earning his master’s degree in physical geography (climatology), Gerbis has spent most of his life in Arizona. He also holds a master’s degree in journalism and mass communication from Arizona State University’s Cronkite School and a bachelor’s degree in geography (climatology/meteorology), also from ASU.Gerbis briefly “retired in reverse” and moved from Arizona to Wisconsin, where he taught science history and science-fiction film courses at University of Wisconsin-Eau Claire. He is glad to be back in the Valley and enjoys contributing to KJZZ’s Untold Arizona series.During the COVID-19 pandemic, Gerbis focused almost solely on coronavirus-related stories and analysis. In addition to reporting on the course of the disease and related research, he delved into deeper questions, such as the impact of shutdowns on science and medicine, the roots of vaccine reluctance and the policies that exacerbated the virus’s impact, particularly on vulnerable populations.