Psychosocial implications of genetic testing and precision medicine for children & their families and the healthcare professionals who care for them

We researched the psychosocial implications for children and their families of precision medicine and genetic testing, and how to support and educate healthcare professionals in delivering precision medicine.

We identified common impacts of and barriers to precision medicine, developed educational resources for families, and established NSW as a world leader in collaborative psychosocial research in childhood genetics.

Professor Claire Wakefield
Professor in the Discipline of Paediatrics, School of Women’s and Children’s Health, UNSW Sydney Faculty of Medicine and Head, Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW

• Dr Kate Hetherington, Clinical Psychologist and Post-Doctoral Research Fellow in the Behavioural Sciences Unit in the School of Women and Children’s Health, UNSW Sydney
• Brittany McGill, Research Fellow, Behavioural Sciences Unit in the School of Women and Children’s Health, UNSW Sydney
• Ms Suzanne Nevin, Clinical Research Assistant, Behavioural Sciences Unit in the School of Women and Children’s Health, UNSW Sydney

• UNSW Sydney, School of Women’s and Children’s Health (Australia)
• Children’s Cancer Institute (Australia)
• Sydney Children’s Hospitals Network (Australia)
• Hereditary Cancer Clinic, Prince of Wales Hospital Sydney (Australia)
• Zero Childhood Cancer Group (Australia)
• Li Fraumeni Syndrome Association (Australia)
• ANZCHOG (Australian & New Zealand Children’s Haematology/Oncology Group)
• SPHERE (Sydney Partnership for Health, Education, Research and Enterprise)

Psychosocial Impact – Luminesce Alliance Impact Report 2022_2023

Precision Medicine video resources for families

1. Precision medicine and childhood cancer: What does it all mean for me?
2. Precision medicine and childhood cancer: What could happen if you take part?
3. Parent journeys through a precision medicine trial for their child’s cancer
4. What are childhood cancer clinical trials?

‘Finding a Way’ video resources

While these seven brief video resources were designed for parents of children with severe epilepsy, they are also intended to support health care professionals caring for these children. The suite of psychological resources (‘Finding a Way’)are being used across the Sydney Children’s Hospitals Network and are currently hosted online on the Paediatric Epilepsy Network New South Wales website.

See Luminesce Alliance Publications – completed research – Psychosocial Enabling Platform