LEUPP, Ariz. — The Navajo Nation signed a data sharing agreement May 7 to advance uranium exposure research efforts on birth outcomes and early developmental delays on the Navajo Nation.
Navajo Nation President Jonathan Nez signed the agreement during a ceremony held at Navajo Head Start in Leupp, with John Hopkins University and their subcontractor RTI International — Research Triangle Park, to allow for data sharing between the Navajo Nation and grantees of the Environmental Influence on Child Health Outcomes (ECHO) grantees under the National Institutes of Health.
According to the National Institutes of Health, which facilitated the data sharing agreement, the final agreement was created to respect Navajo cultural beliefs, sovereignty and community values. It is the first tribal data-sharing agreement for a nationwide research consortium creating a large-scale database, and lays the groundwork for discussion with other tribes considering participation in biomedical research programs.
The agreement enables the Navajo Birth Cohort Study to continue as part of the ECHO program and for individual participant data to be shared with ECHO consortium members, which does not include genetic data or sharing of biospecimens.
The Navajo Birth Cohort Study was developed to better understand the relationship between uranium exposures and birth outcomes and early developmental delays on the Navajo Nation through the epidemiologic study of pregnancy and neonatal outcomes in a uranium-exposed population.
“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. I am optimistic that through this partnership, the Navajo Cohort Study will continue to progress and clarify the environmental impacts on our children’s health,” Nez said.
“The data sharing agreement is a monumental collaboration of true government to government relationships for Indian country. We appreciate the genuine efforts to further advancing research and examine health outcomes from uranium exposure for our population. We hope this serves as a model for other tribal nations,” said Navajo Department of Health Executive Director Dr. Jill Jim.
U.S. Department of Health and Human Services Deputy Secretary Eric Hargan was also present for the signing ceremony and shared his appreciation for the partnership of the Navajo Nation.
“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,” Hargan said. “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.”
Launched in 2016, the Environmental influence on Child Health Outcomesaims to enhance the health of children for generations to come. ECHO investigators study the effects of a broad range of early environmental influences on child health and development. The program consists of 71 existing and ongoing observational studies, which now includes the Navajo Birth Cohort Study, as well as a pediatric clinical trials network.
Information provided by the Office of the President and Vice President