{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,7,20]],"date-time":"2025-07-20T03:19:24Z","timestamp":1752981564817,"version":"3.40.5"},"reference-count":24,"publisher":"Wiley","issue":"12","license":[{"start":{"date-parts":[[2023,11,17]],"date-time":"2023-11-17T00:00:00Z","timestamp":1700179200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J Paediatrics Child Health"],"published-print":{"date-parts":[[2023,12]]},"abstract":"<jats:sec><jats:title>Aim<\/jats:title><jats:p>Technological advances and increased access have led to genomics expanding beyond the genetics clinic. Consequently, nephrologists can now order genomic testing for their patients. Consistent decision\u2010making around patient and test selection is required to ensure equitable access while maximising the utility of genomic testing. However, there are currently no frameworks to guide decision\u2010making for testing in this context. We aimed to develop an ethical decision\u2010making framework for genomic testing in paediatric nephrology.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A three\u2010stage approach was used: (i) review of the literature on decision\u2010making for genomic testing in nephrology and other disciplines; (ii) ethnographic observation of approaches to genomic testing in the general nephrology and renal genetics clinics at an Australian paediatric hospital; (iii) review and revision of the framework with key stakeholders, including clinical geneticists, genetic counsellors, paediatric nephrologists and families from the renal genetics service. The initial framework was modified until consensus from key stakeholders was reached.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>A decision\u2010making framework was created with questions designed to explore the impact of genomic testing on patient management, clinical validity, patient characteristics, alternatives to genomic testing, genetic counselling, resource availability, implications for family members, psychosocial considerations, patient autonomy, research, support services and insurance. Case studies were developed to demonstrate the framework's application.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>This framework was designed to guide decisions around patient selection for genomic testing in nephrology in the Australian health\u2010care setting, with potential utility in other institutions and medical disciplines. It may help facilitate consistent approaches to genomic testing, to maximise equity and utility.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jpc.16514","type":"journal-article","created":{"date-parts":[[2023,11,17]],"date-time":"2023-11-17T18:08:37Z","timestamp":1700244517000},"page":"1304-1310","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["A decision\u2010making framework for genomic testing in paediatric nephrology"],"prefix":"10.1111","volume":"59","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5083-3922","authenticated-orcid":false,"given":"Inez","family":"Beadell","sequence":"first","affiliation":[{"name":"Department of Paediatrics University of Melbourne  Melbourne Victoria Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2746-6903","authenticated-orcid":false,"given":"Catherine","family":"Quinlan","sequence":"additional","affiliation":[{"name":"Department of Paediatrics University of Melbourne  Melbourne Victoria Australia"},{"name":"Kidney Flagship, Murdoch Children's Research Institute  Melbourne Victoria Australia"},{"name":"Department of Paediatric Nephrology The Royal Children's Hospital  Melbourne Victoria Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2023,11,17]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(19)32977-0"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1097\/MNH.0000000000000597"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1681\/ASN.2016050562"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41436-020-00963-4"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ekir.2021.08.028"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ekir.2020.10.030"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/nep.13494"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1080\/09638288.2020.1741695"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.2215\/CJN.01190210"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2017.10"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1172\/JCI95300"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bbadis.2022.166348"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.kint.2020.10.035"},{"key":"e_1_2_9_15_1","first-page":"41","article-title":"Percutaneous real\u2010time ultrasound\u2010guided renal biopsy by automated biopsy gun in children: Safety and complications","volume":"19","author":"Sinha MD","year":"2006","journal-title":"J. Nephrol."},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12882-019-1285-2"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.3389\/fped.2017.00291"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.1053\/j.ajkd.2020.03.026"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00467-019-04241-7"},{"key":"e_1_2_9_20_1","unstructured":"TillerJ GleesonP McInerney\u2010LeoAM KeoghL NowakK Barlow\u2010StewartK et al.Final stakeholder report of the Australian genetics and life insurance moratorium: monitoring the effectiveness and response (A\u2010GLIMMER) project. [Internet]. Monash University; 2023. p. 7775038 Bytes. Available from:https:\/\/bridges.monash.edu\/articles\/report\/_strong_Final_Stakeholder_Report_of_the_strong_em_strong_Australian_Genetics_and_Life_Insurance_Moratorium_Monitoring_the_Effectiveness_and_Response_A\u2010GLIMMER_strong_em_strong_Project_strong_\/23564538\/1"},{"key":"e_1_2_9_21_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjgh-2020-004415"},{"key":"e_1_2_9_22_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ekir.2022.04.095"},{"key":"e_1_2_9_23_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41525-017-0017-4"},{"key":"e_1_2_9_24_1","doi-asserted-by":"publisher","DOI":"10.1007\/s40142-014-0052-8"},{"key":"e_1_2_9_25_1","doi-asserted-by":"publisher","DOI":"10.1186\/1472-6963-14-89"}],"container-title":["Journal of Paediatrics and Child Health"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jpc.16514","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,12,26]],"date-time":"2023-12-26T07:14:01Z","timestamp":1703574841000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/jpc.16514"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,11,17]]},"references-count":24,"journal-issue":{"issue":"12","published-print":{"date-parts":[[2023,12]]}},"alternative-id":["10.1111\/jpc.16514"],"URL":"https:\/\/doi.org\/10.1111\/jpc.16514","archive":["Portico"],"relation":{},"ISSN":["1034-4810","1440-1754"],"issn-type":[{"type":"print","value":"1034-4810"},{"type":"electronic","value":"1440-1754"}],"subject":[],"published":{"date-parts":[[2023,11,17]]},"assertion":[{"value":"2023-06-09","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-10-27","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-11-17","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}