NIH Awards 9 Million to Research effects of Covid on Indigenous Communities
Landmark award gives indigenous communities more autonomy over health policy decisions affecting them
The National Institute of Health has awarded $9 million for an Indigenous-led Tribal Data Repository aimed at improving community health post-COVID-19. Additionally, Arizona State University assistant professor Krystal Tsosie received $1.2 million for her research focused on ethical data collection.
Global indigenous communities were significantly affected by the COVID-19 pandemic, experiencing higher rates of hospitalization and death. Indigenous researchers worldwide have actively worked to comprehend the impact of COVID-19 and offer data to guide improved policy decisions, as stated in a press release by ASU.
Professor Tsosie, a member of the Navajo Nation, will lead a subproject dedicated to researching and designing ethical approaches to data sharing, analysis, and implementation. Her work specifically centers on fostering trust between the scientific community and indigenous communities.
Beyond her academic responsibilities, Tsosie co-founded the Native BioData Consortium (NativeBio), the first U.S. Indigenous-led biobank. She is a strong advocate for the inclusion of indigenous community members and scientists in the data collection process.
“For us, by us’ has been our motto to drive researcher questions and to better understand the data. Sometimes outsiders fail to understand factors that contribute to disparities and health inequities outside the research samples,” said Tsosie.
Joseph Yracheta, the executive director of NativeBio, called the award a landmark decision.
“The true extent of COVID-19 disparities among Indigenous people is likely underestimated. This is mostly because of underreporting in the absence of a unified, Indigenous-led data resource,” said Yracheta.
This project is an extension of the National Institutes of Health's three-year-long initiative to comprehend the impact of COVID-19 on indigenous communities throughout the United States.
Matt Anderson, associate professor of medical genetics at the University of Wisconsin-Madison and Eastern Band of Cherokee descent, said that NativeBio’s data collection methods respect tribes and their culture more than traditional approaches.
“Scientists are accountable to Indigenous people in the use of Tribal Data and NativeBio is accountable to Indian Country as being good stewards of their data. This approach models systems and understandings that more closely align with Indigenous mechanisms of community responsibility," said Anderson.
As the first Indigenous geneticist-bioethicist at ASU, Tsosie feels a duty to do work that helps her community.
“I want to bring all of these skill sets related to health inequities and genetic epidemiology back to the communities that I grew up with. Who better to protect our data and improve research about us than Indigenous people themselves?” Tsosie said.