Date: Sunday, June 2, 2019
Session Name: Concurrent Session: Psychosocial and Treatment Adherence
Session Time: 4:30pm-6:00pm
Presentation Time: 4:42pm-4:54pm
Location: Room 208
*Purpose: Apolipoprotein L1 (APOL1) risk variants may contribute to live kidney donors’ (“donors”) kidney failure post-donation. Because professional guidelines suggest informing potential donors with African ancestry about the availability of APOL1 genotyping, physicians will likely engage in more discussions about APOL1 genetic testing with potential donors whom physicians perceive as having African ancestry. Tension between use of racial/ethnic identity to determine whom to offer genetic testing raises the controversial question of racialized medicine. This study assessed African American (AA) donors’ perceptions of APOL1 genetic testing and how APOL1 may affect AA ethnic identity.
*Methods: Four focus groups were conducted with AA live 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.
*Results: Seventeen AA donors participated (47% participation rate). One theme was that most would have had APOL1 testing during living donor evaluation (77%) to make a more informed decision and provide insight into their future risk for chronic kidney disease, but would have donated regardless of test results. Some would not have been tested because the results would not have affected their decision to donate. Few felt disinclined to have been tested because results might have made them more ambivalent or unlikely to donate. A second theme was uncertainty over whom to identify as the target population for APOL1 testing given the history of mixing among racial/ethnic groups, creating uncertainty over one’s ancestry. Donors recommended that all potential live kidney donors, especially AA donors, be offered APOL1 testing because they are potentially at risk of having APOL1 risk variants. Offering testing only to donors who identify as AA may miss people at risk. A third theme was that participants worried that having 2 APOL1 risk variants could be considered a pre-existing condition, fearing that insurance companies might discriminate against AA donors or raise premium rates. Others related APOL1 testing to the history of medical abuses against AAs: “genetics” conjured donors’ distrust in the healthcare system in reference to the Tuskegee Syphilis Study and Henrietta Lacks’s cell line; APOL1 “genetic testing” was related to medical experimentation. Most (94%) would have used the educational brochure if they were thinking about donating, and agreed (77%) the brochure seemed culturally sensitive to AAs.
*Conclusions: Our findings suggest that AA live kidney donors desire APOL1 genetic testing to foster informed consent. Transplant clinicians should be cognizant of who is susceptible to having APOL1 gene variants, and sensitive to historical issues of distrust and discrimination in the AA population.
To cite this abstract in AMA style:Gordon EJ, Amortegui D, Wicklund C, Friedewald J, Sharp R. African American Living Kidney Donors’ Perceptions of APOL1 Genetic Testing and Its Impact on Ethnic Identity [abstract]. Am J Transplant. 2019; 19 (suppl 3). https://atcmeetingabstracts.com/abstract/african-american-living-kidney-donors-perceptions-of-apol1-genetic-testing-and-its-impact-on-ethnic-identity/. Accessed August 12, 2020.
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