Navajo Nation to share health data as part of NIH initiative

The Navajo Nation tribe has signed the first tribal data-sharing agreement with the National Institutes of Health to support a nationwide pediatric research consortium.

The agreement between the Navajo Nation and NIH grantees of the Environmental influences on Child Health Outcomes (ECHO) Program—which includes Johns Hopkins University and nonprofit institute RTI International—will help to create a large-scale database from pediatric cohorts.

NIH is hoping that the agreement will lay the groundwork for discussions with other tribal nations to facilitate their participation in the biomedical research community, which “has traditionally been slow to involve American Indian and Alaska Native people in research in a way that respects their beliefs and customs or improves their health,” according to NIH Principal Deputy Director Lawrence Tabak.

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While the agreement enables the Navajo Birth Cohort Study to continue as part of the ECHO program and NBCS individual participant data to be shared with consortium members, NIH announced that it does not cover genetic data or sharing of biospecimens out of “respect” for Navajo Nation cultural beliefs, tribal sovereignty and community values.

“HHS is pleased that this collaboration has resulted in a data-sharing and use agreement that respects the traditions and culture of the Navajo people and we hope will build trust in research,” said Deputy HHS Secretary Eric Hargan. “It is exciting that the Navajo Nation will contribute to a major nationwide research program in child health that is poised to benefit Navajo mothers and children, as well as moms and kids across the United States.”

The ECHO program, which consists of 71 ongoing observational studies, is examining how exposure to a range of environmental factors in early development—from conception through early childhood—influences the health of children and adolescents. ECHO’s Data Analysis Center at Johns Hopkins University and RTI International is responsible for managing all existing and new data from pediatric cohorts.

Specifically, the Navajo Birth Cohort Study is investigating the effects of environmental exposure to uranium and other toxicants on pregnancy outcomes and child development in the Native American tribe, located in the Southwestern United States.

“Through this agreement, I am confident that data sharing will benefit our Navajo people and allow us to further understand the relationship between uranium exposure, birth effects and childhood development,” said Navajo Nation President Jonathan Nez. “I am optimistic that through this partnership, the Navajo Birth Cohort Study will continue to progress and clarify the environmental impacts on our children’s health.”