Kidney Week

Abstract: SA-PO066

Community Deliberations on APOL1 Testing in African Americans

Session Information

• Transplantation: Recipient and Donor Assessment
  October 27, 2018 | Location: Exhibit Hall, San Diego Convention Center
  Abstract Time: 10:00 AM - 12:00 PM

Category: Genetic Diseases of the Kidney

• 1002 Genetic Diseases of the Kidney: Non-Cystic

Authors

• Umeukeje, Ebele, Vanderbilt University Medical Center, Nashville, Tennessee, United States

Ebele Umeukeje,

• Burke, Wylie, University of Washington, Seattle, Washington, United States

Wylie Burke,

• Cavanaugh, Kerri L., Vanderbilt University Medical Center, Nashville, Tennessee, United States

Kerri L. Cavanaugh,

• Fullerton, Stephanie M., University of Washington, Seattle, Washington, United States

Stephanie M. Fullerton,

• Wilson, James G., University of Mississippi Medical Center, Jackson, Mississippi, United States

James G. Wilson,

• Young, Bessie A., University of Washington, Seattle, Washington, United States

Bessie A. Young,

• Blacksher, Erika, University of Washington, Seattle, Washington, United States

Erika Blacksher,

Background

African Americans (AA) are 2-4 times more likely to develop ESRD, compared to whites. Apolipoprotein L1 (APOL1) variants have been associated with greater risk of developing non-diabetic ESRD among African Americans (AAs), and greater risk of developing incident CKD, proteinuria, and transplant failure. Mechanisms of risk and penetrance, and effective preventive measures for kidney disease remain unclear. We engaged AAs to discuss potential pros and cons of APOL1 risk testing in routine patient and kidney transplant care.

Methods

As part of a larger assessment of stakeholder views, we conducted community deliberations with self-identified AAs in Seattle WA (n=14), Nashville TN (n=14), and Jackson MS (n=11). Information on APOL1 genetic risk was provided prior to, and during each meeting. Plenary and small group discussions were held followed by 2 rounds of polling on APOL1 testing options. Deliberations occurred over 2 days for 10 hours per site. Participants at each site reviewed results and provided feedback.

Results

Participants were diverse in gender, age, education, and kidney disease experience. With regard to routine patient care, responses varied on who should be tested: all AAs(64%); AAs with CKD risk factors(21%); AAs with signs of CKD(10%); no AAs(5%). Increased knowledge, improved self-care, and aid to clinical management and research were reasons to support testing. Lack of clinical utility and increased psychological burdens, potential discrimination and cost, were reasons to oppose testing. Participants agreed unanimously that deceased donor kidneys be tested. Views on APOL1 testing in other kidney transplant scenarios varied: offer testing to potential living donors(95%); require testing in potential living donors(73%), and prevent living donors with APOL1 risk from donating(10%). Participants felt that APOL1 testing was ‘actionable’ in the transplant setting, but expressed concern that it might reduce kidney supply.

Conclusion

Well-informed AAs have valuable input on best practices in APOL1 testing in routine patient and kidney transplant care. There was consensus that deceased donor kidneys should be tested for APOL1 risk; however, views on APOL1 risk testing in other scenarios were divergent. Continued stakeholder deliberation is imperative as the science evolves to inform best practices.

Funding

• Other NIH Support