Amanda Rush1, Robert Battisti2, Belinda Barton3, Daniel Catchpoole4. 1. The Tumor Bank, The Children's Cancer Research Unit, The Kids Research Institute, The Children's Hospital at Westmead, Westmead, NSW, Australia. 2. The Children's Hospital Education Research Institute, The Children's Hospital at Westmead, Westmead, NSW, Australia. 3. The Children's Hospital Education Research Institute, The Children's Hospital at Westmead, Westmead, NSW, Australia; The School of Child Health, Discipline of Pediatrics, Faculty of Medicine, University of Sydney, NSW, Australia. 4. The Children's Hospital Education Research Institute, The Children's Hospital at Westmead, Westmead, NSW, Australia; The School of Child Health, Discipline of Pediatrics, Faculty of Medicine, University of Sydney, NSW, Australia. Electronic address: daniel.catchpoole@health.nsw.gov.au.
Abstract
OBJECTIVE: To evaluate young adult cancer survivor opinions on whether their biobanked tissue and associated de-identified clinical data obtained during their childhood should require re-consent at the age of majority, when parental consent was originally provided. STUDY DESIGN: Thirty young adults (18-34 years old), who were former pediatric oncology patients of The Children's Hospital at Westmead with stored research biospecimens, were recruited. They completed a semistructured interview, which included questions on biobanking re-consent, awareness of biobanked tissue, satisfaction about banked tissue, and independence within the family. Analyses included descriptive and inferential statistics. RESULTS: Sixty percent of participants thought that permission for biobanking should be sought again at adulthood, and the remaining 40% did not think that re-consent was necessary. Seventy percent of participants were unaware of their previously banked tissue, which was dependent upon age at diagnosis. When asked whether they granted permission for their tissue to remain in the biobank, all participants agreed. CONCLUSIONS: Although results on whether young adults prefer to re-consent or not for previously biobanked tissue and corresponding clinical data are equivocal, survivors appear to be highly favorable about ongoing biobanking of their childhood specimens for future unspecified research.
OBJECTIVE: To evaluate young adult cancer survivor opinions on whether their biobanked tissue and associated de-identified clinical data obtained during their childhood should require re-consent at the age of majority, when parental consent was originally provided. STUDY DESIGN: Thirty young adults (18-34 years old), who were former pediatric oncology patients of The Children's Hospital at Westmead with stored research biospecimens, were recruited. They completed a semistructured interview, which included questions on biobanking re-consent, awareness of biobanked tissue, satisfaction about banked tissue, and independence within the family. Analyses included descriptive and inferential statistics. RESULTS: Sixty percent of participants thought that permission for biobanking should be sought again at adulthood, and the remaining 40% did not think that re-consent was necessary. Seventy percent of participants were unaware of their previously banked tissue, which was dependent upon age at diagnosis. When asked whether they granted permission for their tissue to remain in the biobank, all participants agreed. CONCLUSIONS: Although results on whether young adults prefer to re-consent or not for previously biobanked tissue and corresponding clinical data are equivocal, survivors appear to be highly favorable about ongoing biobanking of their childhood specimens for future unspecified research.
Authors: Sara Casati; Bridget Ellul; Michaela Th Mayrhofer; Marialuisa Lavitrano; Elodie Caboux; Zisis Kozlakidis Journal: Front Public Health Date: 2022-09-27
Authors: Wiktor Paskal; Adriana M Paskal; Tomasz Dębski; Maciej Gryziak; Janusz Jaworowski Journal: Pathol Oncol Res Date: 2018-05-05 Impact factor: 3.201