The US National Institutes of Health (NIH) has negotiated an agreement with the Navajo Nation that will allow researchers on an agency-funded study to access health information from tribe members. The arrangement does not cover genetic data or access to biological samples.
Officials announced the data-sharing agreement on 7 May. It will give scientists working on the Environmental Influences on Child Health Outcomes (ECHO) project — a 7-year initiative launched in 2016 to track the long-term health of at least 50,000 children in the United States — access to some data from an ongoing study of Navajo children’s health. The arrangement is a first between a tribe and a nationwide research consortium that’s compiling a large-scale database such as ECHO.
The Navajo Birth Cohort Study (NBCS) follows the children of about 1,600 Navajo parents from before birth, to track how exposure to uranium and other pollutants from mining activities on Navajo reservations affects the kids’ development. ECHO researchers will be able to use NBCS data — such as measurements of metal exposure — in their larger study, but won’t be able to take biological samples themselves.
The Navajo Nation’s institutional review board will also be able to scrutinize any papers containing NBCS data before publication, says David Wilson, director of the NIH’s Tribal Health Research Office.
“I think this is huge because this is a step forward in building trust,” Wilson says. Many American Indian tribes are wary about allowing access to their members’ biological data, owing to past experiences.
The Havasupai Tribe in the southwestern United States sued Arizona State University in Tempe in 2004 over alleged misuse of members’ blood samples. And the Navajo Nation, which is the second largest federally recognized tribe in the United States, has banned genetic research on its land since 2002. Wilson hopes that the data-sharing agreement will open the door for similar arrangements between tribes and researchers.