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Joseph Yracheta: The Native Biodata Consortium is the first nonprofit data and sample repository within the geographic bounds and legal jurisdiction of an American Indian nation, on the Cheyenne River Sioux Reservation in Eagle Butte, S.D.
NativeBio participated in a program created by the National Institutes of Health for studying Black and Native communities, which suffered the most during the Covid-19 pandemic. We started work in February of 2024, building a server network to share Covid-19 data within the jurisdictional security of each tribal nation. The most common data elements were survey questions, like age, location, education, how many times you caught Covid-19 and how many times you got vaccinated.
There is a dearth of health data for Indigenous communities. Our network would have helped existing data get interpreted and implemented correctly. The survey data was to be put in a virtual container so scientists could access it. As users, they would be contractually obligated to follow the laws of each tribal nation. That model could then be modified for higher-risk genetic data.
The official notification came in July. Out...