ELSIcon2022 Paper: Race-Based Genetic Testing: Learning from Black Americans to Inform Policy and Practice

ELSIcon2022 • Paper • May 27, 2022

James DuBois, Ana Iltis

Geographical ancestry has been associated with increased risk of various genetic conditions. Race and ethnicity often have been used as proxies for geographical ancestry. Despite numerous problems associated with the crude reliance on race and ethnicity as proxies for geographical ancestry, some genetic testing in the clinical, research, and employment settings has been and continues to be race-based. Race-based or race-targeted genetic testing refers to genetic testing offered only or primarily to people of particular racial groups because of presumed differences among groups. One current example is APOL1 testing of Black kidney donors. Race-based genetic testing raises numerous ethical and policy questions. Given the ongoing reliance on Black race in genetic testing, it is important to understand the views of people who identify as Black or are identified as Black (including African American, Afro-Caribbean, and Hispanic Black) regarding race-based genetic testing that targets Black people because of their race. The presentation provides an overview of a recent systematic literature review of studies that have examined the attitudes, perspectives, beliefs, or views of Black people regarding race-based genetic testing. Our review identified 15 studies that explicitly studied this question and another 12 that implicitly or tacitly studied this matter. The presentation will highlight themes that emerged and lessons that can be learned about race-based genetic testing. These findings can inform future genetic research and the policies and practices developed in the clinical setting regarding genetic testing.