Elisa J. Gordon|Daniela Am?rtegui|Isaac Blancas|Catherine Wicklund|John Friedewald|Richard R. Sharp
African American Living Donors’ Attitudes About APOL1 Genetic Testing: A Mixed Methods Study
Northwestern University|Cal Humanities|Northwestern University|Northwestern University|Northwestern University|Northwestern University|Mayo Clinic
african american live kidney donors donors greater risk kidney failure european american donors apolipoprotein l1 gene apol1 variants african americans may associated disparitycrosssectional mixedmethods designafrican american donors 1 transplantation centersemistructured interviews assessed attitudes apol1 genetic testing willingness undergo apol1 testing hypothetical decisions donating 2 apol1 variants demographics surveys assessed perceptions ethnic identity genetics knowledge interview transcriptions analyzed using thematic analysis survey data analyzed using descriptive statistics23 donors participated semistructured interviews 96 reported transplantation centers routinely offer apol1 genetic testing african american potential donors 87 would willing undergo apol1 testing donating although study participants noted apol1 testing may deter african american potential donors donating 61 would donated even 2 highrisk apol1 variants several themes emerged study participants believed apol1 testing beneficial providing information help donors make informed donation decisions participants expressed concern apol1 variants placing donors harm kidney failure therefore valued taking preventive health measures participants believed potential donors would experience psychological distress learning 2 gene variants could harm recipients participants apprehensive insurance coverage costs apol1 testing feared apol1 genetic test results could discriminate african americansfindings may generalizable african american potential donorsfindings suggest african american donors support apol1 genetic testing yet fear apol1 variants genetic testing could adversely affect donors health ethnic identity transplantation centers using apol1 genetic testing address african american donors concerns apol1 genetic testing optimize future donors informed consent practices