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Kidney Week

Abstract: FR-PO1028

Community-Based Evaluation of APOL1 Genetic Testing in African Americans: National Stakeholder Meeting and Return of Results Recommendations

Session Information

Category: Genetic Diseases of the Kidney

  • 1002 Genetic Diseases of the Kidney: Non-Cystic

Authors

  • Young, Bessie A., Veterans Affairs Puget Sound Health Care System, Seattle, Washington, United States
  • Cavanaugh, Kerri L., Vanderbilt University Medical Center, Nashville, Tennessee, United States
  • Wilson, James G., University of Mississippi Medical Center, Jackson, Mississippi, United States
  • Blacksher, Erika, University of Washington, Seattle, Washington, United States
  • Fullerton, Stephanie M., University of Washington, Seattle, Washington, United States
  • Umeukeje, Ebele, Vanderbilt University Medical Center, Nashville, Tennessee, United States
  • Himmelfarb, Jonathan, University of Washington, Seattle, Washington, United States
  • Burke, Wylie, University of Washington, Seattle, Washington, United States
Background

African Americans (AA) are 2-4 times more likely to develop ESRD, compared to whites. Apolipoprotein L1 (APOL1) high-risk variants have been associated with greater risk of developing non-diabetic ESRD among African Americans (AAs), incident CKD, proteinuria, and transplant failure compared to those with wild type APOL1. Currently there is a lack of national guidelines for genetic testing for APOL1 in transplantation and general clinical care.

Methods

We convened a national meeting of stakeholders (researchers, clinicians, patients, family members, community members, national advocacy and professional organizations, and NIH representatives) to develop guidance for policy-makers and clinicians regarding APOL1 genetic testing in transplantation and general clinical care. We identified areas of consensus, disagreement, and needed research. Participants received educational information, APOL1 research updates, results of stakeholder interviews and of community deliberative groups. Participants discussed APOL1 relevant policy concerns regarding genetic testing.

Results

After 2 days of discussion, draft conclusions regarding APOL1 were developed, including: 1) AA should be informed about APOL1 risk; 2) APOL1 testing should be integrated into renal transplant programs; 3) routine use of APOL1 testing in general clinical care is not recommended, because it is not actionable; 4) research is crucial to ensure better understanding of APOL1 risk; and 5) AA community involvement in the development of policies and educational materials about APOL1 risk and testing is recommended to ensure testing policies address community preferences. Areas with lack of consensus included: 1) whether transplant programs should require APOL1 testing of living donors; 2) whether transplant recipients should be told the APOL1 status of transplanted kidneys; and 3) access to APOL1 testing in general clinical care.

Conclusion

Draft conclusions from a national stakeholder meeting regarding APOL1 risk indicate consensus regarding informing the AA community regarding APOL1 genetic testing in transplantation, but lack of consensus regarding using APOL1 testing to determine eligibility for transplant donation or in general clinical care, given current research knowledge.

Funding

  • NIDDK Support