Invited Speaker Victorian Comprehensive Cancer Centre Inaugural Research Conference 2017

When ethics, genetics and paediatrics collide: Investigating the impact of genetic testing, genetics-related service needs, and the acceptability of new genetics in childhood cancer (#31)

Claire Wakefield 1 2
  1. School of Women's and Children's Health, University of New South Wales, Sydney, NSW, Australia
  2. Sydney Children's Hospital, Randwick, NSW, Australia

Little is known about genetic testing, genetics-related beliefs, and the acceptability of genetics services in the context of childhood cancer. This presentation will describe the largest series of genetics services studies undertaken in paediatric oncology in Australia and New Zealand. Professor Wakefield will present data from a qualitative study describing the impact of cancer-related genetic testing on 38 families of children with cancer. Next, she will describe a mixed-methods study of the genetics-related service and information needs of childhood cancer survivors and their parents (n=1,215). She will conclude by presenting her research on survivors’ and the public’s perceived acceptability of new genetics technologies in childhood cancer, with a focus on genetic testing to determine survivors’ risk of developing late side effects and using patient-derived xenografts to test potential treatments for newly diagnosed children (n>2,000). Families of children with cancer have substantial unmet needs regarding genetics services/information. Though clinical efficacy is yet to be clearly demonstrated, families of children with cancer describe positive interest in new genetics services. Individuals in the general community appear more cautious, likely because they have not personally experienced the impact of childhood cancer.