Dr Christopheer Gyngell1
1University Of Melbourne/Murdoch Children’s Research Institute , Melbourne, Australia
Neonatal intensive care units (NICUs) are a priority implementation area for genomic medicine. Rapid genomic testing in the NICU is expected to be genomic medicine’s ‘critical application’, providing such clear benefits that it drives the adoption of genomics more broadly. Studies from multiple centres worldwide have now demonstrated the clinical utility and cost-effectiveness of genomic testing in this setting, paving the way for widespread implementation. However, the introduction of this potentially powerful tool for predicting future impairment in the NICU also raises profound ethical challenges. Developing models of good practice that incorporate the identification, exploration and analysis of ethical issues will be critical for successful implementation. In this presentation, I analyse three such issues: 1) the value and meaning of gaining consent to a complex test in a stressful, emotionally-charged environment; 2) the effect of rapid diagnosis on parent-child bonding and its implications for medical and family decisions, particularly in relation to treatment limitation; and 3) distributive justice – whether the substantial cost and diversion of resources to deliver rapid genomic testing in the NICU can be justified. I conclude by outlining the implications of my argument for policy and practice.
Christopher Gyngell is a Research Fellow in Biomedical Ethics at the Murdoch Children’s Research Institute and University of Melbourne. His research interests lie primarily in the ethical implications of biotechnologies and the philosophy of health and disease. Chris was previously a Marie Sklodowska-Curie Fellow at the University of Oxford. Chris was awarded his PhD in Philosophy from the Australian National University in 2015. Before undertaking his PhD, Chris completed a Master’s degree in Applied Ethics and an honours degree in Genetics.