Genetic testing and precision medicine have the potential to revolutionise the diagnosis, treatment and long-term management of many chronic illnesses in childhood, yet the psychosocial implications for children and their families remain unknown. This project aims to increase understanding of the potential psychosocial benefits and harms of genetic testing and precision medicine. It will be the first study to assess patients’, parents’ and healthcare providers’ experiences, hopes and expectations of precision medicine trials and genetic testing across paediatric illnesses. This knowledge will inform the development of resources to support and educate families and healthcare providers. As a result, healthcare providers will be empowered to provide effective psychosocial support to the families most at-risk, and families will be supported in decision-making about whether or not to enroll in a precision medicine trial. Through a better understanding of families’ needs, and through the development of educational resources, NSW healthcare providers will feel more confident to recommend precision medicine and genetic testing to their patients.

Collaborations

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