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

Overview

abstract

RATIONALE AND OBJECTIVE: Transplant center practices regarding APOL1 testing of living kidney donor candidates vary. 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. STUDY DESIGN: In-depth, semi-structured interviews with Black living donors (LDs) and potential LDs who underwent APOL1 genotyping during their donor evaluation to explore their experiences, beliefs, and motivations regarding APOL1 testing in the context of actual LD decision-making. SETTINGS & PARTICIPANTS: 31 Black people (24 self-identified non-Hispanic Black people and 7 Hispanic Black people) who were evaluated for living kidney donation, had APOL1 testing, and agreed to donate were interviewed via Zoom. ANALYTIC APPROACH: Thematic analysis of de-identified transcripts of semi-structured interviews. RESULTS: Four themes emerged from analysis of interviews: (1) Information and communication needs, concerns, and preferences: information that living donor candidates receive often does not meet their expectations or needs, some actual and eligible participants did not recall testing; (2) Decisions regarding APOL1 testing and results: a common concern is that testing could result in being unable to donate, and many participants believed that donor candidates should be involved in deciding whether to test and how to use the results; (3) Sharing results with kidney recipients: some participants believe that it is important to share APOL1 status with intended recipients to help them make informed decisions; (4) Race and APOL1 testing: some participants expressed concern with using race as a basis for APOL1 testing. Transplant programs can use these results to inform their APOL1 testing policies and practices. LIMITATIONS: Most participants who were told and remembered their APOL1 status had a lower-risk genotype; people with higher-risk genotypes might hold different views. We were unable to verify self-reported APOL1 results. All participants were enrolled in the APOLLO study and were willing to be re-contacted to participate in research. Recall bias could have affected our findings because of the time that elapsed between testing and the interview. CONCLUSION: Major themes emerging from interviews were consistent with previous research and focused on the need for more transparent information sharing with prospective donors and the importance of autonomy and shared decision-making. PLAIN LANGUAGE SUMMARY: 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.