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American Heart Association Provides Guidance for Genomic Research With Underrepresented Groups

NEW YORK — Researchers in genetics and genomics should advance the representation of Indigenous peoples and marginalized racial and ethnic groups in research while working to rebuild trust, according to a new policy statement from the American Heart Association.

Individuals of European ancestry make up about 80 percent of participants in genome-wide association studies even though they only make up about 16 percent of the global population. Because of this overrepresentation of European ancestry groups, results from genetic and genomic studies may not benefit individuals from other groups and exacerbate existing health inequities.

However, historical wrongs, such as the Tuskegee Study of Untreated Syphilis or the unapproved use of tissue from Henrietta Lacks, and even recent events, such as those involving the Havasupai and Arizona State University researchers and the San people of South Africa and other researchers, may contribute to mistrust among Indigenous peoples and marginalized racial and ethnic groups toward medical researchers and make it challenging to recruit diverse research cohorts.

In a new policy statement appearing in Circulation: Genomic and Precision Medicine, the AHA calls on researchers to work toward dismantling these barriers by working with leaders from Indigenous peoples and marginalized racial and ethnic groups and adhering to the ethical principles of respect, honesty, justice, reciprocity, and care for individuals and communities.