The Navajo Nation represents the second largest native nations, as measured by land, in the contiguous United States. Recently the National Institutes of Health (NIH) and the Navajo Nation researched an agreement allowing researchers working on a study funded by the agency to access health data from tribe members. The data sharing agreement will offer researchers collaborating on environmental influences on Child Health Outcomes (ECHO) project access to some data from an ongoing study of Navajo Children’s health. A seven year initiative, the project was launched in 2016 to track the long-term health of 50,000 children in the US. This deal represents a first-of-its-kind, inking a formal research relationship between a nationwide research consortium such as ECHO, Nature News notes.
Following about 1,600 Navajo children from birth in an effort to determine uranium and other environmental exposure, the Navajo Birth Cohort Study (NBCS) researchers now will have access to data sources required for a comprehensive longitudinal study. The Navajo Nation’s Institutional review board will be allowing to review any papers containing NBCS data prior to publication.
This deal brought up the contentious Havasupai tribe vs. Arizona State University lawsuit back in 2004. In that conflict, the tribe alleged that the university misused its members’ blood samples. The Navajo Nation has banned genetic research on its land since 2002. The NIH’s director of Tribal Health Research Office hopes this partnership will establish the foundation for long term trust.Source: Genome Web