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Community-Based Evaluation of APOL1 Genetic Testing in African Americans

Variants in the Apoliprotein L1 (APOL1) gene are causally associated with 7-10 fold increase risk of developing end-stage kidney disease (ESKD). These variants are found almost exclusively in people of West African ancestry, and ESKD is a well-known health disparity, affecting African Americans 2-4 times more than European Americans. However, there is nothing known to reduce the risk of APOL1-associated ESKD, so knowing one's APOL1 status does not help a doctor care for the patient. Because of this, and the distrust among many African American communities in medical and research systems, it is important to ask the community and affected patients how APOL1 information should be used.  The project includes interviews with diverse stakeholders, public deliberation in three African-American communities (in Jackson, MS, Nashville, TN, and Seattle, WA); and a national meeting bringing together community members, scientists, bioethicists, advocates, and other stakeholders, to develop recommendations for APOL1 testing and disclosure of risk genotypes to African Americans who may be at risk of ESKD.

Active Dates 
09/15/2015 to 08/31/2019
Faculty Involved