Psychosocial impact for families and health professionals
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.
This project will be the first to assess patients’, parents’ and healthcare providers’ experiences, hopes and impacts of precision medicine trials and genetic testing across illnesses. It will enable us to identify common impacts and barriers of precision medicine and genetic testing across illnesses, whilst also identifying unique challenges in each disease.
Data collected from the project will inform the development of a decision aid for families and educational resources for healthcare providers, improving the quality of informed consent, families’ understanding of genetic testing and precision medicine and their satisfaction with care.