Insights From Black Living Kidney Donors: An Interview Study on APOL1 Genetic Testing Experiences

Potential living kidney donors who are identified as Black or African American sometimes undergo APOL1 genetic testing. The experiences, beliefs, and preferences of living kidney donors who have undergone APOL1 testing can provide valuable insights for transplant programs to consider when developing APOL1 testing policies. We interviewed 31 self-identified Black people who had APOL1 testing and were evaluated to be living kidney donors. We found that (1) they often wanted more information than they recieved; (2) many people think that potential donors should help to decide whether to get tested and how to use their results; (3) some people believe that potential kidney recipients should have access to their donor's APOL1 results; and (4) using race as the basis for testing raises concerns. We identify some implications our findings may have for transplant programs as they develop their APOL1 testing policies.