Rationale & Objective: African American (AA) live kidney donors (‘donors’) have a greater risk of kidney failure than do European American donors. Apolipoprotein L1 gene (APOL1) variants in AAs may be associated with this disparity. Study Design: Cross-sectional, mixed-methods design. Setting & Participants: AA donors at one transplant center. Analytic Approach: Semi-structured interviews assessed attitudes about APOL1 genetic testing, willingness to undergo APOL1 testing, hypothetical decisions about donating with two APOL1 variants, and demographics. Surveys assessed perceptions of ethnic identity and genetics knowledge. Interview transcriptions were analyzed using thematic analysis. Survey data were analyzed using descriptive statistics. Results: Twenty-three donors participated in semi-structured interviews. Most (96%) reported that transplant centers should routinely offer APOL1 genetic testing to all AA potential donors. Most (87%) would have been willing to undergo APOL1 testing before donating. Although study participants noted that APOL1 testing may deter AA potential donors from donating, most (61%) would have donated even if they had two high risk APOL1 variants. Several themes emerged. Study participants believed that APOL1 testing would have provided information helpful to donors’ ability to make informed donation decisions. Participants expressed concern about APOL1 variants placing donors at harm for kidney failure and, therefore, valued taking preventive health measures. Participants believed that potential donors would experience psychological distress from learning they have two gene variants and could harm their recipients. Participants were apprehensive about insurance coverage and costs of APOL1 testing and feared that APOL1 genetic test results could discriminate against AAs. Limitations: Findings may not be generalizable to AA potential donors. Conclusions: Findings suggest that AA donors support APOL1 genetic testing, yet fear that APOL1 variants and genetic testing could adversely affect donors’ health and ethnic identity. Transplant centers using APOL1 genetic testing should address AA donors’ concerns about APOL1 genetic testing to optimize future donors’ informed consent practices.

Introduction: Because apolipoprotein L1 ( APOL1) risk variants may contribute to live donors’ kidney failure postdonation, professional guidelines suggest informing potential donors with African ancestry about the availability of APOL1 genotyping. This study assessed African American (AA) donors’ perceptions of APOL1 genetic testing and how APOL1 may affect ethnic identity. Methods/Approach: Four focus groups were conducted with AA donors about their decision-making for and perceptions of APOL1 genetic testing and donation to inform a new culturally targeted educational brochure on APOL1 genetic testing. Qualitative data were analyzed by thematic analysis. Findings: Seventeen donors participated (47% participation rate). Four major themes emerged. (1) In hypothetical scenarios, most participants would have undergone APOL1 testing during donor evaluation to make a more informed decision, but many would have still donated. (2) Participants desired information about how having 2 APOL1 risk variants affects the donor’s and the recipient’s health. (3) Participants referred to diversity of genetic ancestry and cultural constructions of racial/ethnic identity to question the population at risk for APOL1 risk variants and recommended that all potential donors undergo genetic testing and receive education about APOL1. (4) Participants worried that out-of-pocket costs would deter APOL1 testing and that APOL1 could become a preexisting condition and discriminate against AAs. Discussion: Our findings suggest that AA donors desire APOL1 testing to foster informed consent. Transplant clinicians should be aware of these responses to APOL1 testing and be sensitive to historical issues of distrust and discrimination.