View of healthcare professionals on ultra-rapid genome sequencing and its future implementation in clinical practice for critically ill children

Eur J Hum Genet. 2025 Jul;33(7):937-944. doi: 10.1038/s41431-025-01869-y. Epub 2025 May 23.

Abstract

The clinical utility of ultra-rapid genome sequencing (urGS) in neonatal and paediatric intensive care situations has been demonstrated, and barriers to its implementation in clinical practice studied. A 38-item questionnaire was distributed via medical professional learned societies to identify the views of French healthcare professionals in the field prior to its implementation. Overall, 116 responses were received: 35% from healthcare professionals working in clinical genetics, 19% in laboratory genetics, and 32% in paediatric or neonatal intensive care units (NICU/PICU). Nearly all (97%) respondents agreed that healthcare professionals should receive specific training before a first test order; 94% considered urGS useful, and 97% that the results would likely modify a decision to withdraw life-sustaining treatment. A multidisciplinary approval of the urGS request was considered necessary by 87% of respondents, and multidisciplinary discussion of the result by 84%; joint disclosing of results by a clinical geneticist and NICU/PICU physician was considered ideal for 91% of respondents, and 78% were against additional findings being disclosed at the same time as the result. For 99% of respondents, psychological assistance was crucial after the result. Based on the results, we propose a workflow to facilitate implementation in a broad range of centres.

MeSH terms

  • Attitude of Health Personnel*
  • Child
  • Critical Illness*
  • Genetic Testing* / methods
  • Genetic Testing* / standards
  • Health Personnel* / psychology
  • Humans
  • Infant, Newborn
  • Intensive Care Units, Pediatric
  • Surveys and Questionnaires
  • Whole Genome Sequencing* / methods