In DepthBiomedicine

Native American groups wary of big U.S. biobank

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Science  31 May 2019:
Vol. 364, Issue 6443, pp. 812-813
DOI: 10.1126/science.364.6443.812

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Earlier this month, leaders of the National Institutes of Health (NIH) in Bethesda, Maryland, celebrated the 1-year anniversary of All of Us, a massive effort to identify correlations between DNA and health by enrolling 1 million volunteers. They pointed with pride to the study's diversity: More than 50% of the 143,000 participants fully enrolled so far belong to minority groups. But Native Americans, who make up 1.7% of the U.S. population, are not formally on board. Many tribal leaders and Indigenous scientists are hesitant about the study because of a history of mistreatment by researchers and the U.S. government. Formal meetings with tribal nations began this month, and NIH staff members say the discussions will lead to an action plan. But tribal leaders are unhappy that these discussions did not begin sooner, and that Native Americans are informally enrolling in the study in the meantime.