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Agreement Made

The NIH has reached an agreement with the Navajo Nation to allow researchers working on a study funded by the agency to access health data from tribe members, but not their genetic data or biological samples, Nature News reports. 

The data-sharing agreement will give researchers working on the Environmental Influences on Child Health Outcomes (ECHO) project access to some data from an ongoing study of Navajo children's health. The project is a seven-year initiative launched in 2016 to track the long-term health of 50,000 children in the US. This deal is the first of its kind between a tribe and a nationwide research consortium such as ECHO, Nature News notes.

The Navajo Birth Cohort Study (NBCS) follows the children of about 1,600 Navajo parents from birth to determine how exposure to uranium and other pollutants from mining activities on Navajo reservations affects the kids' development. ECHO researchers will be able to use the NBCS data in their study, but won't be allowed to take their own biological samples, Nature News adds. Further, the Navajo Nation's institutional review board will be allowed to review any papers containing NBCS data before publication.

The Havasupai tribe had sued Arizona State University in Tempe in 2004 over what the tribe alleged was misuse of its members' blood samples. And the Navajo Nation, which is the second largest Native American community in the US, has banned genetic research on its land since 2002. David Wilson, director of the NIH's Tribal Health Research Office tells Nature News that he hopes that the data-sharing agreement will build trust.