
Essential Ethics
2025 National Paediatric Bioethics Conference: Ethics of children with rare diseases and the resulting disability participating in commercially sponsored advanced therapy clinical trials
In this episode of Essential Ethics, recorded at the 2025 National Paediatric Bioethics Conference, research nurse coordinator Cat Wood from the Murdoch Children’s Research Institute explores the ethical challenges of advanced therapy clinical trials for children with rare genetic conditions. Focusing on gene therapy trials for inherited epilepsy, she examines issues of consent, disability, risk, and equity in research involving children with severe neurodisability. Cat highlights the importance of meaningful engagement with patients and families, offering thoughtful insights into the ethical complexities of developing potentially life-changing therapies.

