The NIH has facilitated a data-sharing and use agreement between the Navajo Nation and NIH grantees of the Environmental influences on Child Health Outcomes (ECHO) Program, which was ratified in a ceremony at the Navajo Nation Head Start Center in Leupp, AZ. The agreement was signed by the Navajo Nation, Johns Hopkins University (JHU), Baltimore, and RTI International. It enables the Navajo Birth Cohort Study (NBCS) to continue as part of the ECHO program and NBCS individual participant data to be shared with ECHO consortium members but does not cover genetic data or sharing of biospecimens. The agreement was created to respect Navajo Nation cultural beliefs, Tribal 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 Tribal Nations considering participation in biomedical research programs. The agreement is the culmination of two years of discussion facilitated by NIH.
Led by the University of New Mexico, Albuquerque, the NBCS is investigating the effects of environmental exposure to uranium and other toxicants on pregnancy outcomes and child development on the Navajo Nation. The provisions in the Navajo Nation agreement are over and above the data sharing policy for all other ECHO cohorts.
Launched in 2016, ECHO aims 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, now including the NBCS, as well as a pediatric clinical trials network. Research conducted through ECHO focuses on five key pediatric outcomes that have a high public health impact: pre-, peri- and postnatal outcomes; upper and lower airway health; obesity; neurodevelopment; and positive health, such as happiness and a sense of wellbeing.
