NIH, ECHO, and the Navajo Nation Make History with New Data-Sharing and Use Agreement

This landmark agreement enables the Navajo Birth Cohort Study (NBCS) to continue as part of the ECHO Program.

A Mother’s Love. Mallery Quetawki (Zuni Pueblo). University of New Mexico College of Pharmacy-Community Environmental Health Program

May 8, 2019

The National Institutes of Health (NIH) facilitated a data-sharing and use agreement between the Navajo Nation and NIH grantees of the Environmental influences on Child Health Outcomes (ECHO) Program at the Navajo Nation Head Start Center in Leupp, Arizona. This agreement, signed by the Navajo Nation, Johns Hopkins University, and RTI International, enables the Navajo Birth Cohort Study to continue participating in the ECHO Program while maintaining respect for Navajo Nation cultural beliefs, Tribal sovereignty, and community values. Additionally, the agreement serves as the first Tribal data-sharing agreement for a nationwide research consortium creating a large-scale database.

“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.”

The landmark agreement is the culmination of two years of discussion facilitated by NIH, and lays the groundwork for discussions with other Tribal Nations considering participation in biomedical research programs. Most importantly, the study is poised to benefit Navajo mothers and children as well as mothers and children everywhere. More information about the agreement can be found in the NIH news release here.