Dr Christopher Gyngell1
1Murdoch Children’s Research Institute
Although rapid genomic sequencing (RGS) is improving care for critically ill children with rare disease, it raises important ethical questions that need to be explored as its use becomes more widespread. One question relates to the degree of consent that should be required for RGS to proceed and whether it is appropriate to perform RGS in cases where no parent is available to consent. In this presentation, I use an illustrative case study to explore both legal and ethical perspectives on this question. I argue that RGS provides a context where it is ethically appropriate to consider an effect on patient outcomes when deciding the degree of consent required; and that the unique clinical context of RGS in critically ill children challenges existing paradigms regarding consent for genomic sequencing.
Biography:
Christopher Gyngell is a Senior Research Fellow in Biomedical Ethics at the Murdoch Children’s Research Institute and the University of Melbourne. His research focuses on the ethics of biotechnologies like genome editing. He is currently leading an MRFF project on the ethics of rapid genomic sequencing in critically ill children.