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ETHICS & GENETICS TEAM 
​PUBLICATIONS

Children and Young People
  • McGill BC, Wakefield CE, Vetsch J, Barlow-Stewart K, Kasparian NA, Patenaude AF, Young MA, Cohn RJ, Tucker KM. Children and young peoples’ understanding of inherited health conditions and their attitudes towards genetic testing: A systematic review. Clin Genet. 2019;95(1):10-22. https://doi.org/10.1111/cge.13253
  • Hetherington K, Wakefield CE, Kunalan KPK, Donoghoe MW, McGill BC, Fardell JE, Daly R, Deyell RJ, Ziegler DS. Quality of Life (QoL) of Children and Adolescents Participating in a Precision Medicine Trial for High-Risk Childhood Cancer. Cancers. 2022; 14(21):5310. https://doi.org/10.3390/cancers14215310  
 
Families’ Experiences
  • Vetsch J, Wakefield CE, Duve E, McGill BC, Warby M, Tucker KM, Malkin D, Lau L, Ziegler DS. Parents', healthcare professionals' and scientists' experiences of a precision medicine pilot trial for high-risk childhood cancer patients: A qualitative study. JCO Precis Oncol. 2019;3:1-11. https://ascopubs.org/doi/pdf/10.1200/PO.19.00235?role=tab
  • McGill BC, Wakefield CE, Vetsch J, Lim Q, Warby M, Metcalfe A, Byrne JA, Cohn RJ, Tucker KM. “I remember how I felt, but I don’t remember the gene”: Families’ experiences of cancer-related genetic testing in childhood. Paediatric Blood Cancer. 2019; 66(8): e27762. https://doi.org/10.1002/pbc.27762
  • Hunter, J.D.; Robertson, E.G.; Hetherington, K.; Ziegler, D.S.; Marshall, G.M.; Kirk, J.; Marron, J.M.; Denburg, A.E.; Barlow-Stewart, K.; Warby, M.; Tucker, K.M.; Lee, B.M.; O’Brien, T.A.; Wakefield, C.E. What’s in a Name? Parents’ and Healthcare Professionals’ Preferred Terminology for Pathogenic Variants in Childhood Cancer Predisposition Genes. J. Pers. Med. 2022, 12, 1327. https://doi.org/10.3390/jpm12081327 
  • Gereis J, Hetherington K, Ha L, Robertson EG, Ziegler DS, Barlow-Stewart K, Tucker KM, Marron JM, Wakefield CE. Parents’ understanding of genome and exome sequencing for pediatric health conditions: a systematic review. European Journal of Human Genetics. 2022 Aug 23:1-0. https://doi.org/10.1038/s41431-022-01170-2
  • Vetsch, J*., Hetherington, K*, Wakefield, CE., & Ziegler, DS. (2020) Families’ experiences of a precision medicine trial for childhood cancer [Invited Editorial]. Oncology Central. https://www.oncology-central.com/subject-area/patient-perspective/families-experiences-of-a-precision-medicine-trial-for-childhood-cancer/
  • A peer commentary on this paper was written in Developmental Medicine & Child Neurology by Tumiene, B., (2021) Unmet psychosocial needs of parents of children with rare, complex, and severe genetic diseases https://onlinelibrary.wiley.com/doi/10.1111/dmcn.15002
  • Warby M, Wakefield CE, Vetsch J, Tucker K. Families’ and health care professionals’ attitudes towards Li-Fraumeni syndrome testing in children: A systematic review. (2019). Clinical Genetics 95 (1): 140-150 https://doi.org/10.1111/cge.13442
 
Cancer
  • Kenny, K., Broom, A., Page, A., Prainsack, B., Wakefield, C.E., Itchins, M., Lwin, Z., Khasraw, M. (2021). A sociology of precision-in-practice: the affective and temporal complexities of therapeutic innovation in cancer care. Sociology of Health and Illness, 43(9), 2178-2195 https://doi.org/10.1111/1467-9566.13389
  • Broom, A., Kenny, K., Veazey, L.W., Page, A., Prainsack, B., Wakefield, C.E., Khasraw, M., Itchins, M. and Lwin, Z., 2022. Living (well) with cancer in the precision era. SSM-Qualitative Research in Health, 2, p.100096 https://doi.org/10.1016/j.ssmqr.2022.100096
  • Page, A., Broom, A., Kenny, K., Lwin, Z., Wakefield, C.E., Itchins, M., Khasraw, M. (2022). Experiencing the SARS-CoV-2 pandemic whilst living with cancer. Qualitative Health Research, 32(3), 426-439 https://doi.org/10.1177/10497323211057082​

​Health Care Professionals
  • Vetsch J, Wakefield CE, Techakesari P, Warby M, Ziegler DS, O’Brien TA, Drinkwater C, Neeman N, Tucker K. (2019) Healthcare professionals’ attitudes toward cancer precision medicine: A systematic review. Seminars in Oncology https://doi.org/10.1053/j.seminoncol.2019.05.001
  • McGill, B. C., Wakefield, C. E., Hetherington, K., Munro, L. J., Warby, M., Lau, L., ... & Malkin, D. (2020). “Balancing Expectations with Actual Realities”: Conversations with Clinicians and Scientists in the First Year of a High-Risk Childhood Cancer Precision Medicine Trial. Journal of Personalized Medicine, 10(1), 9 https://doi.org/10.3390/jpm10010009
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