{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,3]],"date-time":"2025-11-03T18:03:01Z","timestamp":1762192981001,"version":"build-2065373602"},"reference-count":68,"publisher":"MDPI AG","issue":"11","license":[{"start":{"date-parts":[[2025,11,2]],"date-time":"2025-11-02T00:00:00Z","timestamp":1762041600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Cancer Institute Translational Program Grant","award":["2021\/TPG2112"],"award-info":[{"award-number":["2021\/TPG2112"]}]},{"name":"Medical Research Future Fund through the Emerging Priorities and Consumer Driven Research scheme"},{"name":"Zero Childhood Cancer National Personalised Medicine Program"},{"DOI":"10.13039\/501100000925","name":"NHMRC of Australia","doi-asserted-by":"publisher","award":["APP2008300"],"award-info":[{"award-number":["APP2008300"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Luminesce Alliance\u2014Innovation for Children\u2019s Health."}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JPM"],"abstract":"<jats:p>Background\/Objectives: Precision medicine is transforming care for children with cancer, but raises new challenges. We explored parents\u2019, oncologists\u2019 and scientists\u2019 perspectives on three aspects of a precision medicine trial for poor prognosis childhood cancer: data sharing, requests for additional tumor biopsies, and confidentiality. Methods: Data were collected through PRISM-Impact, a psychosocial sub-study within the Zero Childhood Cancer Program\u2019s PRISM trial. Parents completed questionnaires at enrolment and one year later, and an optional interview after receiving their child\u2019s trial results. Bereaved parents completed a questionnaire six months after bereavement (T1B). Oncologists and scientists were interviewed one year following trial commencement. Quantitative data were analyzed descriptively, and qualitative data thematically. Results: Parents (n = 126) considered additional tumor biopsies acceptable when risks were low and their child or oncologist supported the request. Oncologists (n = 26) emphasized weighing risk\u2013benefit, ensuring parents felt fully informed, and research value. Most parents supported data sharing (\u226589\u201396%), including after bereavement, despite potential privacy concerns. Parents supported overseas and interstate testing, and scientists having access to identifiable health information. Scientists (n = 10) found working with identifiable data emotionally challenging. Conclusions: Parents, oncologists, and scientists showed high acceptance of procedural aspects of precision medicine. Future trials should address privacy concerns and ensure informed consent recognizes that parents\u2019 high acceptability of procedures may be linked to their hopes for benefit, reinforcing the need for informed consent.<\/jats:p>","DOI":"10.3390\/jpm15110531","type":"journal-article","created":{"date-parts":[[2025,11,3]],"date-time":"2025-11-03T17:32:01Z","timestamp":1762191121000},"page":"531","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Data Sharing, Biopsies and Patient Confidentiality in a Precision Medicine Trial for Childhood Cancer: A Mixed Method Study of Parents, Oncologists, and Scientists\u2019 Perspectives"],"prefix":"10.3390","volume":"15","author":[{"given":"Yvanna","family":"Lei","sequence":"first","affiliation":[{"name":"School of Clinical Medicine, Discipline of Pediatrics, UNSW Medicine and Health, UNSW Sydney, Sydney, NSW 2031, Australia"},{"name":"Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children\u2019s Hospital, Randwick, NSW 2031, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5457-5462","authenticated-orcid":false,"given":"Kate","family":"Hetherington","sequence":"additional","affiliation":[{"name":"School of Clinical Medicine, Discipline of Pediatrics, UNSW Medicine and Health, UNSW Sydney, Sydney, NSW 2031, Australia"},{"name":"Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children\u2019s Hospital, Randwick, NSW 2031, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1096-0526","authenticated-orcid":false,"given":"Rebecca","family":"Daly","sequence":"additional","affiliation":[{"name":"School of Clinical Medicine, Discipline of Pediatrics, UNSW Medicine and Health, UNSW Sydney, Sydney, NSW 2031, Australia"},{"name":"Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children\u2019s Hospital, Randwick, NSW 2031, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Niki","family":"Rensen","sequence":"additional","affiliation":[{"name":"School of Clinical Medicine, Discipline of Pediatrics, UNSW Medicine and Health, UNSW Sydney, Sydney, NSW 2031, Australia"},{"name":"Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children\u2019s Hospital, Randwick, NSW 2031, Australia"},{"name":"Princess Maxima Center, 3584 CS Utrecht, The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2134-2988","authenticated-orcid":false,"given":"Brittany C.","family":"McGill","sequence":"additional","affiliation":[{"name":"School of Clinical Medicine, Discipline of Pediatrics, UNSW Medicine and Health, UNSW Sydney, Sydney, NSW 2031, Australia"},{"name":"Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children\u2019s Hospital, Randwick, NSW 2031, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7451-7916","authenticated-orcid":false,"given":"David S.","family":"Ziegler","sequence":"additional","affiliation":[{"name":"School of Clinical Medicine, Discipline of Pediatrics, UNSW Medicine and Health, UNSW Sydney, Sydney, NSW 2031, Australia"},{"name":"Kids Cancer Centre, Sydney Children\u2019s Hospital, Randwick, NSW 2031, Australia"},{"name":"Children\u2019s Cancer Institute, UNSW Sydney, Sydney, NSW 2031, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3172-0970","authenticated-orcid":false,"given":"Loretta M. S.","family":"Lau","sequence":"additional","affiliation":[{"name":"School of Clinical Medicine, Discipline of Pediatrics, UNSW Medicine and Health, UNSW Sydney, Sydney, NSW 2031, Australia"},{"name":"Kids Cancer Centre, Sydney Children\u2019s Hospital, Randwick, NSW 2031, Australia"},{"name":"Children\u2019s Cancer Institute, UNSW Sydney, Sydney, NSW 2031, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Vanessa","family":"Tyrrell","sequence":"additional","affiliation":[{"name":"School of Clinical Medicine, Discipline of Pediatrics, UNSW Medicine and Health, UNSW Sydney, Sydney, NSW 2031, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2538-6400","authenticated-orcid":false,"given":"Jonathan","family":"Karpelowsky","sequence":"additional","affiliation":[{"name":"Department of Paediatric Surgery, Children\u2019s Hospital at Westmead, Westmead, NSW 2145, Australia"},{"name":"Children\u2019s Cancer Research Unit, Kids Research Institute, Children\u2019s Hospital at Westmead, Westmead, NSW 2145, Australia"},{"name":"Division of Child and Adolescent Health, University of Sydney, Sydney, NSW 2145, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9519-5714","authenticated-orcid":false,"given":"Mark J.","family":"Cowley","sequence":"additional","affiliation":[{"name":"School of Clinical Medicine, Discipline of Pediatrics, UNSW Medicine and Health, UNSW Sydney, Sydney, NSW 2031, Australia"},{"name":"Children\u2019s Cancer Institute, UNSW Sydney, Sydney, NSW 2031, Australia"},{"name":"Kinghorn Centre for Clinical Genomics, Garvan Institute, Darlinghurst, NSW 2010, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7180-6576","authenticated-orcid":false,"given":"Katherine M.","family":"Tucker","sequence":"additional","affiliation":[{"name":"Kids Cancer Centre, Sydney Children\u2019s Hospital, Randwick, NSW 2031, Australia"},{"name":"Hereditary Cancer Centre, Department of Medical Oncology, Prince of Wales Hospital, Randwick, NSW 2031, Australia"},{"name":"Prince of Wales Clinical School, UNSW Sydney, Randwick, NSW 2031, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michelle","family":"Haber","sequence":"additional","affiliation":[{"name":"School of Clinical Medicine, Discipline of Pediatrics, UNSW Medicine and Health, UNSW Sydney, Sydney, NSW 2031, Australia"},{"name":"Children\u2019s Cancer Institute, UNSW Sydney, Sydney, NSW 2031, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3184-8499","authenticated-orcid":false,"given":"Paulette","family":"Barahona","sequence":"additional","affiliation":[{"name":"Children\u2019s Cancer Institute, UNSW Sydney, Sydney, NSW 2031, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7704-7067","authenticated-orcid":false,"given":"Claire E.","family":"Wakefield","sequence":"additional","affiliation":[{"name":"School of Clinical Medicine, Discipline of Pediatrics, UNSW Medicine and Health, UNSW Sydney, Sydney, NSW 2031, Australia"},{"name":"Division of Quality of Life and Pediatric Palliative Care, Department of Pediatrics, Stanford University and Stanford Medicine Children\u2019s Health, Palo Alto, CA 94304, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1968","published-online":{"date-parts":[[2025,11,2]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"e42","DOI":"10.1016\/S1470-2045(18)30761-7","article-title":"Childhood cancer burden: A review of global estimates","volume":"20","author":"Bhakta","year":"2019","journal-title":"Lancet Oncol."},{"key":"ref_2","unstructured":"Australian Institute of Health and Welfare (AIHW) (2022). 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