Project summary
The psychosocial implications of genetic testing and precision medicine for children and their families and the healthcare professionals who care for them.
What is the issue for NSW?
Genetic testing and precision medicine has 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. The testing is usually complex, making study information and aims difficult for patients, parents and even healthcare providers (HCPs) to understand. The evidence-base proving the survival benefits for patients on precision medicine trials is also still emerging, making some HCPs reluctant to enrol their patients. Further, it is unknown whether offering genetic testing in children is acceptable and what the long-term consequences on their well-being will be.
There will be clear benefits to NSW families considering precision medicine or genetic testing for their child. We will be able to offer educational support for families to improve decision-making and increase satisfaction with care. Families identified most at-risk will receive the psychosocial support they need. Through better understanding of families’ needs and development of educational resources, NSW healthcare providers will feel more confident to enrol their patients in precision medicine and genetic testing. Therefore, an increasing number of families and patients will benefit from testing, ultimately leading to greater treatment outcomes and survival.
Through our findings, NSW hospitals and research centres will gain a reputation as world leaders in collaborative, psychosocial research in childhood genetics. The project will enable creation of new jobs and training for NSW researchers and will demonstrate NSW’s international leadership.
What does the research aim to do and how?
This study will be the first 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 enrol 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.
Read more about the work of Luminesce Alliance.
Partnering institutions
- Children’s Cancer Institute
- University of NSW
- Children’s Medical Research Institute
- Sydney Children’s Hospitals Network