Navajo Nation enters into first data-sharing agreement for health study

Noel Lyn Smith
Farmington Daily Times
Navajo Nation

FARMINGTON — The Navajo Nation has entered into an agreement to allow the sharing of data collected from an epidemiologic study that is examining the effects of heavy metals on pregnancy and child development.

The agreement also regulates the use of the data by two grantees under the National Institutes of Health's Environmental influences on Child Health Outcomes Program.

The National Institutes of Health is the country's medical research agency and it is a component of the U.S. Department of Health and Human Services.

This is the first agreement between a tribe and the nationwide research consortium to create a large-scale database, according to a press release from the National Institutes of Health.

The agreement enables the Navajo Birth Cohort Study to continue as a participant of the ECHO program. Data collected by the cohort will be shared with ECHO members, the release states.

The data does not include genetic data or the sharing of biospecimens, according to the release.

In 2002, the Navajo Nation placed a moratorium on genetic research studies conducted on tribal land.

The release from the National Institutes of Health states the agreement was developed in respect of Navajo cultural beliefs, tribal sovereignty and community values.

The Navajo Birth Cohort Study has been investigating since February 2013 the effects of environmental exposure to uranium and other heavy metals on pregnant women and child development in areas on the Navajo Nation.

Johnnye Lewis, the cohort's principal investigator, said by sharing the information with ECHO program participants, investigators can develop a better understanding of the data.

Lewis said the data remains the property of the Navajo Nation and there are conditions and protocol that consortium members must follow for its use.

She added the data does not include information about cohort participants.

Navajo Nation President Jonathan Nez and HHS Deputy Secretary Eric Hargan signed the agreement on May 7 in Leupp, Arizona, according to a press release from Nez's office.

"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," Nez said in the release.

"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," Hargan said in the release.

Noel Lyn Smith covers the Navajo Nation for The Daily Times. She can be reached at 505-564-4636 or by email at