Apolipoprotein L1 Testing in African Americans: Involving the Community in Policy Discussions

Abstract

Background: Apolipoprotein A1 (APOL1) gene variants occurring in people of West African descent contribute to the greater burden of kidney disease among African Americans. These variants are associated with increased risk of nondiabetic nephropathy, more rapid progression of chronic kidney disease, and shorter survival of donor kidneys after transplantation. However, only a minority of people with APOL1-associated risk develops kidney disease and specific clinical measures to address APOL1-associated risk are lacking. Given these uncertainties, we sought to engage members of the African American public in discussions with other stakeholders about the appropriate use of APOL1 testing. Methods: Formative interviews with community members, researchers, and clinicians in Seattle WA, Nashville TN, and Jackson MS, provided baseline information about views toward APOL1 testing and informed the design of 3 community-based deliberations among African Americans. A national meeting held in March 2018 included 13 community members, 7 scientific advisors and 26 additional researchers, clinicians, bioethicists, patient advocates, and representatives from professional organizations and federal funding agencies. Using small break-out and plenary discussion, the group agreed on recommendations based on current knowledge about APOL1-associated risk. Results: Meeting outcomes included recommendations to develop educational materials about APOL1 for community members and clinicians; to offer APOL1 research results to participants; and on the use of APOL1testing in kidney transplant programs. The group recommended against the routine offer of APOL1 testing in clinical care. Areas of disagreement included whether kidney transplant programs should require APOL1 testing of prospective living donors or bar individuals with APOL1 risk from donating kidneys and whether testing should be available on request in routine clinical care. Conclusion: We recommend continued discussion among stakeholders and concerted efforts to ensure active and informed participation of members of the affected community to guide research on APOL1 and kidney disease.

Opinions of African American adults about the use of apolipoprotein L1 (ApoL1) genetic testing in living kidney donation and transplantation

“…In the context of ApoL1 testing, transplant candidates—regardless of race—also face important ApoL1 questions when offered a kidney from AA deceased and living donors. Most study participants would want an AA deceased donor tested for high‐risk genotype before accepting a kidney for transplantation, which is consistent with perspectives of AA community members and leaders 35 . About half of our sample would not accept a kidney if the deceased donor had a high‐risk genotype.…”

“…We join others in advocating for including AA perspectives in discussing the role of ApoL1 testing in transplantation 35,46 . Unfavorable attitudes toward genetic testing among AAs are commonly reported, 49‐51 and such mistrust is justified in the context of historical maltreatment and discrimination in healthcare 52 .…”

“…Our survey findings are consistent with prior qualitative studies suggesting that high‐risk genotype should be considered only as 1 factor in overall decision‐making about living donation. Broader inclusion of AA perspectives in discussions about ApoL1 testing in transplantation is warranted 19,20,35 …”

APOL1, Black Race, and Kidney Disease: Turning Attention to Structural Racism

“…Decisions regarding APOL1 testing in clinical care should engage key stakeholders, including a diverse group of patients, nephrologists, primary care providers, researchers, and bioethicists, considering opportunities for patient counseling and the need to develop targeted treatments. 41 Finally, since APOL1 polymorphisms cannot fully explain the racial disparities in kidney disease, research that examines how structural racism mediates impairments in kidney function deserves closer attention.…”

At the Research-Clinical Interface

“…Furthermore, providing the option to learn research results may strengthen relationships between researchers and minority populations (32). Our data suggest that researchers and clinicians support the return of APOL1 information to research participants but with substantial cautions about ensuring that there are resources to reduce confusion and promote comprehension (33). Practical considerations include ensuring that adequate counseling is readily available and accessible and if needed, the cost of confirming research results in a CLIA-compliant laboratory before they are returned.…”