Ethics & Genetics
The ethics and genetics stream is growing fast, reflecting the increased use of genetic testing and personalised medicine in paediatrics. Our team is assessing the psychological impact of new genetic technologies on children and families and explores the ethical questions arising in this novel area of medicine.
Our team leads the patient-reported outcomes study in the PRISM clinical trial, one of the largest personalised medicine trials for childhood cancer patients worldwide. We recently won a UNSW Scientia Scholarship for a PhD to support this work. We have developed new models of care for bereaved families within our Compass study. Foundational to our work is the Delta Study which is investigating how young people and their families make medical decisions within the context of clinical trials.
‘PRISM-Impact’ aims to better understand families’ attitudes toward, and the impact of, personalised therapy in childhood cancer.
The Compass study aimed to further understand the complex layers of loss: loss of their child, of pre-existing formal and informal relationships in their community, and the loss of what some term, the ‘hospital family’.
Delta aims to better understand how young people and parents make medical decisions, and specifically to understand how clinical trial decisions are made.