Journal article
Rapid Genome Sequencing: Consent for New Technologies in the Neonatal Intensive Care Context
F Lynch, T Prentice, L Gillam, Z Stark, C Gyngell
Pediatrics | Published : 2022
Abstract
The clinical utility of rapid genome sequencing (rGS) in critically unwell infants has been consistently demonstrated, and there are calls for rGS to be implemented as a first-line test in the NICU. A diagnosis from rGS can enable rapid initiation of precision treatment, making it potentially lifesaving. However, in many patients rGS leads to the diagnosis of severe and life-limiting conditions, prompting discussion with families about withdrawal of life-sustaining treatment. The complexity of information about rGS, together with the heightened emotions of parents in the NICU, poses significant challenges for informed decision making in this context. We present a case where both parents are ..
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Awarded by Murdoch Children's Research Institute
Funding Acknowledgements
Dr Gyngell and Prof Stark, through their involvement with the Murdoch Children's Research Institute, received funding through from the Victorian State Government through the Operational Infrastructure Support Program. This work was supported by the Australian Government through the Medical Research Future Fund, as part of the Genomics Health Futures Mission (Grant Number 76749). The other authors received no external funding. The Australian Government provided funds for the wider clinical study from which this case was drawn. They had no role in the design and conduct of the study.