African American Living Donors’ Attitudes About APOL1 Genetic Testing: A Mixed Methods Study

Abstract

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.