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
  • Gereis JM, Hetherington K, Robertson EG, Daly R, Donoghoe MW, Ziegler DS, Marshall GM, Lau LMS, Marron JM, Wakefield CE. Parents' and adolescents' perspectives and understanding of information about childhood cancer precision medicine. Cancer. 2023 Jun 27. doi: 10.1002/cncr.34914
  • Wakefield CE; Hetherington K; Robertson EG; Donoghoe MW; Hunter JD; Vetsch J; Marron JM; Tucker KM; Marshall GM; Broom A; Haber M; Tyrrell V; Malkin D; Lau L; Mateos MK; O’Brien TA; Ziegler DS, 2023, 'Hopes, concerns, satisfaction and regret in a precision medicine trial for childhood cancer: a mixed-methods study of parent and patient perspectives', British Journal of Cancer, http://dx.doi.org/10.1038/s41416-023-02429-1
  • McGill, B. C., Wakefield, C. E., Tucker, K. M., Daly, R. A., Donoghoe, M. W., Vetsch, J., ... & Hetherington, K. (2023). Parents’ expectations, preferences, and recall of germline findings in a childhood cancer precision medicine trial. Cancer. https://doi.org/10.1002/cncr.34917
 
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​
  • Hetherington, K. Hunter, J.D., Lockridge, R., Warby, M., Raygadam, M., Wakefield, C.E., & Wiener, L. (2023). The Psychosocial Impact of Familial Endocrine Cancer Syndromes (FECS) on the Patient and Caregiver. In: Hannah-Shmouni, F. (eds) Familial Endocrine Cancer Syndromes. Springer, Cham. https://doi.org/10.1007/978-3-031-37275-9_1

​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
  • Daly R., Hetherington K., Hazell E., Wadling B.R., Tyrrell V., Tucker, K.M., Marshall, G.M,. Ziegler, D.S., Lau, L.M.S., Trahair T.N., O'Brien T.A., Collins, K., Gifford A.J., Haber M., Pinese M., Malkin D., Cowley M.J., Karpelowsky J., Drew D., Jacobs C., Wakefield C.E., Precision Medicine Is Changing the Roles of Healthcare Professionals, Scientists, and Research Staff: Learnings from a Childhood Cancer Precision Medicine Trial. Journal of Personalized Medicine, 2023; 13(7):1033. https://doi.org/10.3390/jpm13071033