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

  1. Author:
    Young, Bessie A.
    Blacksher, Erika
    Cavanaugh, Kerri L.
    Freedman, Barry I.
    Fullerton, Stephanie M.
    Kopp, Jeffrey B.
    Umeukeje, Ebele M.
    West, Kathleen M.
    Wilson, James G.
    Burke, Wylie
    Agodoa, Larry
    Bonham, Vence
    Callier, Shawneequa
    Campbell, Kirk
    Choi, Michael
    Davis, Purnell
    Elmi, Ahmed
    Findley, Moise
    Flannery, David
    Fletcher, Faith
    Greer, Raquel
    Hall, Gentzon
    Halliburton, Willie
    Hayes, Maxine
    Hedeen, Ashley
    Himmelfarb, Jonathan
    Horowitz, Carol
    Inman, Wendelyn
    Jones-Smith, Tiffany
    Knight, Richard
    Koenig, Barbara
    McKenzie, Kevin
    Pollak, Martin
    Poston, Kenneth
    Powell, William
    Quaggin, Susan
    Rajapakse, Nishadi
    Roberts, Glenda
    Robinson, Mimsie
    Rotimi, Charles
    Sims, Nia
    Ward, Nannette
    Winkler,Cheryl

  2. Author Address

    Univ Washington, Dept Med, Div Nephrol, VA Puget Sound Hlth Care Syst, Seattle, WA 98195 USA.Univ Washington, Kidney Res Inst, Seattle, WA 98195 USA.Univ Washington, Dept Bioeth & Humanities, 1959 NE Pacific, Seattle, WA 98195 USA.Vanderbilt Univ, Med Ctr, Dept Med, Div Nephrol, Nashville, TN USA.Wake Forest Sch Med, Nephrol Sect, Dept Internal Med, Winston Salem, NC 27101 USA.NIDDK, Kidney Dis Branch, Bethesda, MD 20892 USA.Univ Mississippi, Dept Physiol & Biophys, Jackson, MS 39216 USA.NIDDK, Off Minor Hlth Res Coordinat, Bethesda, MD 20892 USA.NHGRI, Social & Behav Res Branch, Bethesda, MD 20892 USA.George Washington Sch Med & Hlth Sci, Washington, DC USA.Icahn Sch Med Mt Sinai, Amer Soc Nephrol, New York, NY 10029 USA.Johns Hopkins Sch Med, Natl Kidney Fdn, Baltimore, MD USA.NIH, Div Engagement, Bldg 10, Bethesda, MD 20892 USA.Amer Coll Med Genet & Genom, Bethesda, MD USA.Univ Alabama, Sch Publ Hlth, Tuscaloosa, AL 35487 USA.Johns Hopkins Univ, Sch Med, Baltimore, MD 21218 USA.Duke Univ, Sch Med, Durham, NC 27706 USA.Washington State Dept Hlth, Tumwater, WA USA.VA Puget Sound Hlth Care Syst, Seattle, WA USA.Univ Washington, Sch Med, Kidney Res Inst, Seattle, WA 98195 USA.Mt Sinai Sch Med, New York, NY USA.Texas Kidney Fdn, San Antonio, TX USA.Amer Assoc Kidney Patients, Tampa, FL USA.Univ Calif San Francisco, Sch Nursing, San Francisco, CA 94143 USA.Harvard Univ, Beth Israel Med Ctr, Sch Med, Cambridge, MA 02138 USA.Northwestern Univ, Amer Soc Nephrol, Sch Med, Evanston, IL 60208 USA.Natl Inst Minor Hlth & Hlth Disparities, NIH, Bethesda, MD USA.Univ Washington, Kidney Res Inst, Seattle, WA 98195 USA.Bethel Gospel Assembly, Living Water Christian Ctr, Chennai, Tamil Nadu, India.NIH, Metab Cardiovasc & Inflammatory Dis Genom Branch, Ctr Res Genom & Global Hlth, Bldg 10, Bethesda, MD 20892 USA.Mississippi State Univ, Mississippi State, MS 39762 USA.NCI, Frederick Natl Lab, Basic Res Lab, Ctr Canc Res, Bethesda, MD 20892 USA.
    1. Year: 2019
  2. Journal: AMERICAN JOURNAL OF NEPHROLOGY
  3. KARGER,
    1. 50
    2. 4
    3. Pages: 303-311
  5. Type of Article: Article
  6. ISSN: 0250-8095
  1. 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 APOL1 testing 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. (C) 2019 Published by S. Karger AG, Basel

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External Sources

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  2. DOI: 10.1159/000502675
  3. View record in Web of Science®
  4. WOS: 000510826600008

Library Notes

  1. Fiscal Year: FY2019-2020
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