{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,23]],"date-time":"2026-06-23T02:43:53Z","timestamp":1782182633441,"version":"3.54.5"},"reference-count":44,"publisher":"SAGE Publications","issue":"3","license":[{"start":{"date-parts":[[2016,6,23]],"date-time":"2016-06-23T00:00:00Z","timestamp":1466640000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Prog Transpl"],"published-print":{"date-parts":[[2016,9]]},"abstract":"<jats:p>Genetic mutations in apolipoprotein L1 (ApoL1) are associated with kidney disease. Apolipoprotein L1 mutations are common in African Americans (\u223c39% and 12% have 1 and 2 high-risk alleles, respectively). Carrying 2 ApoL1 risk alleles may explain much of the excess rate of kidney failure in African Americans compared to European Americans. Apolipoprotein L1 also has implications for kidney transplantation. Kidney grafts from deceased donors with 2 ApoL1 risk alleles have worse graft survival, but outcomes appear unaffected by recipient ApoL1 status. Unknown is whether donation increases the risk of kidney failure in living donors with 2 ApoL1 risk alleles and whether their donated kidneys have worse graft survival. There are 4 options to consider: (1) remain silent about ApoL1 risk alleles and renal failure and wait for more data; (2) counsel about race, ApoL1, and subsequent renal failure abstractly but remain agnostic about donor testing until more data are available; (3) provide counseling and encourage genotyping of prospective living donors of African ancestry as part of the living donor workup; or (4) mandate testing of all prospective living donors. We support option 3, and recommend, with donor permission, to discuss the results with potential recipients to promote informed decision-making. We also argue for a voluntary donor registry that collects long-term follow-up information. We provide ethical arguments to support these recommendations.<\/jats:p>","DOI":"10.1177\/1526924816654608","type":"journal-article","created":{"date-parts":[[2016,6,15]],"date-time":"2016-06-15T08:37:25Z","timestamp":1465979845000},"page":"203-206","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":29,"title":["Introducing Genetic Tests With Uncertain Implications in Living Donor Kidney Transplantation"],"prefix":"10.1177","volume":"26","author":[{"given":"Lainie Friedman","family":"Ross","sequence":"first","affiliation":[{"name":"MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, IL, USA"},{"name":"Department of Surgery, Section of Transplantation, University of Chicago, Chicago, IL, USA"},{"name":"Department of Pediatrics, Section of Academic Pediatrics, University of Chicago, Chicago, IL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"suffix":"Jr","given":"J. Richard","family":"Thistlethwaite","sequence":"additional","affiliation":[{"name":"MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, IL, USA"},{"name":"Department of Surgery, Section of Transplantation, University of Chicago, Chicago, IL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2016,6,23]]},"reference":[{"key":"bibr1-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1097\/01.ASN.0000091586.46532.B4"},{"key":"bibr2-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1016\/j.amjmed.2008.11.021"},{"key":"bibr3-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1681\/ASN.2013010113"},{"key":"bibr4-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1007\/s00467-013-2531-7"},{"key":"bibr5-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa1310345"},{"key":"bibr6-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1126\/science.1193032"},{"key":"bibr7-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1111\/j.1600-6143.2011.03513.x"},{"key":"bibr8-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1111\/ajt.13223"},{"key":"bibr9-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1111\/j.1600-6143.2012.04033.x"},{"issue":"2","key":"bibr10-1526924816654608","first-page":"238","volume":"18","author":"Madhavan SM","year":"2014","journal-title":"Clin Exp Nephrol"},{"key":"bibr11-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1681\/ASN.2011090932"},{"key":"bibr12-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1097\/MNH.0b013e32835012ab"},{"key":"bibr13-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1152\/ajprenal.00647.2013"},{"key":"bibr14-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1016\/j.semnephrol.2013.07.004"},{"key":"bibr15-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1038\/ki.2013.460"},{"key":"bibr16-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2013.285141"},{"key":"bibr17-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1111\/ajt.13230"},{"key":"bibr18-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1038\/ki.2015.16"},{"key":"bibr19-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1097\/TP.0b013e31822eec39"},{"key":"bibr20-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1053\/j.ajkd.2015.04.046"},{"key":"bibr21-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1016\/0002-9343(78)90458-8"},{"issue":"8","key":"bibr22-1526924816654608","first-page":"751","volume":"74","author":"Johnson LN","year":"1982","journal-title":"J Natl Med Assoc"},{"key":"bibr23-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2014.15063"},{"key":"bibr24-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1111\/j.1432-2277.2007.00611.x"},{"key":"bibr25-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1007\/s11906-011-0237-4"},{"key":"bibr26-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1111\/j.1547-5069.1988.tb00082.x"},{"key":"bibr27-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1177\/0272989X10393976"},{"key":"bibr28-1526924816654608","doi-asserted-by":"publisher","DOI":"10.2307\/3560848"},{"key":"bibr29-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1377\/hlthaff.3.2.74"},{"issue":"5","key":"bibr30-1526924816654608","first-page":"636","volume":"26","author":"Fraser FC","year":"1974","journal-title":"Am J Hum Genet"},{"key":"bibr31-1526924816654608","doi-asserted-by":"publisher","DOI":"10.47102\/annals-acadmedsg.V40N1p36"},{"key":"bibr32-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1023\/A:1023234802124"},{"key":"bibr33-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1080\/00074900051082220"},{"key":"bibr34-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1007\/s11606-012-2077-6"},{"key":"bibr35-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2013-3608D"},{"key":"bibr36-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCRESAHA.114.302347"},{"key":"bibr37-1526924816654608","unstructured":"Organ Procurement and Transplantation Network Policies. Web site. http:\/\/sa.gov\/media\/1200\/optn_policies.pdf. See, policy 15.3 Informed Consent of Transmissible Disease Risk; and for HIV specifically, see policy 2.7 HIV Screening of Potential Deceased Donors or Table 14.4E: Living Donor Exclusion Criteria. Accessed 2016."},{"key":"bibr38-1526924816654608","doi-asserted-by":"publisher","DOI":"10.1034\/j.1399-3046.2001.t01-2-00033.x"},{"key":"bibr39-1526924816654608","unstructured":"Organ Procurement and Transplantation Network (OPTN). National Data [Category: Transplant; Organ Kidney; Report Column: Living Donor Transplants by Donor Relation]. Web site. https:\/\/optn.transplant.hrsa.gov\/data\/view-data-reports\/national-data\/. Accessed June 4, 2016."},{"key":"bibr40-1526924816654608","unstructured":"National Center for Biotechnology Information (NCBI) Genetic Testing Registry (GTR). Web site. http:\/\/www.ncbi.nlm.nih.gov\/gtr\/tests\/?term=8542[geneid]&test_type=Clinical. 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