{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,5]],"date-time":"2026-06-05T13:43:07Z","timestamp":1780666987928,"version":"3.54.1"},"reference-count":0,"publisher":"S. Karger AG","issue":"4","license":[{"start":{"date-parts":[[2019,1,1]],"date-time":"2019-01-01T00:00:00Z","timestamp":1546300800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/www.karger.com\/Services\/SiteLicenses"},{"start":{"date-parts":[[2019,1,1]],"date-time":"2019-01-01T00:00:00Z","timestamp":1546300800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.karger.com\/Services\/SiteLicenses"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Am J Nephrol"],"published-print":{"date-parts":[[2019]]},"abstract":"<b><i>Background:<\/i><\/b> Apolipoprotein A1 (<i>APOL1<\/i>) 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 <i>APOL1<\/i>-associated risk develops kidney disease and specific clinical measures to address <i>APOL1<\/i>-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 <i>APOL1<\/i> testing. <b><i>Methods:<\/i><\/b> Formative interviews with community members, researchers, and clinicians in Seattle WA, Nashville TN, and Jackson MS, provided baseline information about views toward <i>APOL1<\/i> 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 <i>APOL1<\/i>-associated risk. <b><i>Results:<\/i><\/b> Meeting outcomes included recommendations to develop educational materials about <i>APOL1<\/i> for community members and clinicians; to offer <i>APOL1<\/i> research results to participants; and on the use of <i>APOL1<\/i>testing in kidney transplant programs. The group recommended against the routine offer of <i>APOL1<\/i> testing in clinical care. Areas of disagreement included whether kidney transplant programs should require <i>APOL1<\/i> testing of prospective living donors or bar individuals with <i>APOL1<\/i> risk from donating kidneys and whether testing should be available on request in routine clinical care. <b><i>Conclusion:<\/i><\/b> 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 <i>APOL1<\/i> and kidney disease.<\/jats:p>","DOI":"10.1159\/000502675","type":"journal-article","created":{"date-parts":[[2019,9,3]],"date-time":"2019-09-03T21:00:32Z","timestamp":1567544432000},"page":"303-311","source":"Crossref","is-referenced-by-count":31,"title":["Apolipoprotein L1 Testing in African Americans: Involving the Community in Policy Discussions"],"prefix":"10.1159","volume":"50","author":[{"given":"Bessie\u00a0A.","family":"Young","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erika","family":"Blacksher","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kerri\u00a0L.","family":"Cavanaugh","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Barry\u00a0I.","family":"Freedman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stephanie\u00a0M.","family":"Fullerton","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jeffrey\u00a0B.","family":"Kopp","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ebele\u00a0M.","family":"Umeukeje","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathleen\u00a0M.","family":"West","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"James\u00a0G.","family":"Wilson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wylie","family":"Burke","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"APOL1\u00a0Stakeholders\u00a0Project","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"127","published-online":{"date-parts":[[2019,9,3]]},"container-title":["American Journal of Nephrology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.karger.com\/Article\/Pdf\/502675","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.karger.com\/Article\/Pdf\/502675","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,4,23]],"date-time":"2025-04-23T15:54:00Z","timestamp":1745423640000},"score":1,"resource":{"primary":{"URL":"https:\/\/karger.com\/article\/doi\/10.1159\/000502675"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019]]},"references-count":0,"journal-issue":{"issue":"4","published-online":{"date-parts":[[2019,10,8]]},"published-print":{"date-parts":[[2019,10,10]]}},"URL":"https:\/\/doi.org\/10.1159\/000502675","archive":["Portico"],"relation":{},"ISSN":["0250-8095","1421-9670"],"issn-type":[{"value":"0250-8095","type":"print"},{"value":"1421-9670","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019]]}}}