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

摘要

Rationale & ObjectiveAfrican American live kidney donors (“donors”) have a greater risk for kidney failure than European American donors. Apolipoprotein L1 gene (APOL1) variants in African Americans may be associated with this disparity. Study DesignCross-sectional mixed-methods design. Setting & ParticipantsAfrican American donors at 1 transplantation center. Analytical ApproachSemistructured interviews assessed attitudes aboutAPOL1genetic testing, willingness to undergoAPOL1testing, hypothetical decisions about donating with 2APOL1variants, 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. Results23 donors participated in semistructured interviews. Most (96%) reported that transplantation centers should routinely offerAPOL1genetic testing to all African American potential donors. Most (87%) would have been willing to undergoAPOL1testing before donating. Although study participants noted thatAPOL1testing may deter African American potential donors from donating, most (61%) would have donated even if they had 2 high-riskAPOL1variants. Several themes emerged. Study participants believed thatAPOL1testing was beneficial for providing information to help donors make informed donation decisions. Participants expressed concern aboutAPOL1variants 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 that they have 2 gene variants and could harm their recipients. Participants were apprehensive about insurance coverage and costs ofAPOL1testing and feared thatAPOL1genetic test results could discriminate against African Americans. LimitationsFindings may not be generalizable to African American potential donors. ConclusionsFindings suggest that African American donors supportAPOL1genetic testing yet fear thatAPOL1variants and genetic testing could adversely affect donors’ health and ethnic identity. Transplantation centers usingAPOL1genetic testing should address African American donors’ concerns aboutAPOL1genetic testing to optimize future donors’ informed consent practices.