Skip to content
  • About
    • What we do
    • Our history
    • Our team
    • Our committees
    • Our partners
    • About genomics
  • Services
    • What we offer
    • Research we’re supporting
  • Tools & resources
    • Search all tools & resources
    • Research ethics & governance
    • Consent & patient support materials
    • Evaluating genomic research & translation
    • Data governance
    • Access our datasets
    • Data capture & standardisation
    • Data analysis & interpretation
    • Workforce education
    • Our publications
    • Our submissions
  • Our project areas
    • Our project areas
    • Genomic information management
    • Clinical genomic practice
    • Genomic literacy, workforce & training
    • Indigenous genomic priorities
    • Genomic diagnostics
    • Evaluating genomic research & translation
    • Australian health system policy & practice
    • Involvement & engagement
  • News & events
    • News
    • Events
    • Personal stories
    • Search news & events
  • Connect with us

Rapid genomic testing in critically unwell children: Study shines light on parents’ experiences

Home All news & events News Rapid genomic testing in critically unwell…

Ultra-rapid genomic testing is fast becoming a valuable diagnostic tool for some critically unwell children. But what is the experience of their parents in what is often a highly distressing situation?

New research explores the parental experience during the testing process, to inform the design and delivery of the ultra-rapid testing program now rolling out nationally.

The study, Parental experiences of ultra-rapid genomic testing for their critically unwell infants and children, looks at the value parents place on ultra-rapid testing, and how the counselling process can be tailored to meet the needs of parents.

The findings of the Australian Genomics study, are published in the latest edition of Genetics in Medicine, the official journal of the American College of Medical Genetics and Genomics (ACMG).

Parents completed a survey 12 weeks after the ultra-rapid genomic test results were returned. Most of the 55 who responded said they received enough information before and after the test.

This study provides important information from the parents’ perspective at a time when the take-up of rapid genomic testing in neonatal and paediatric intensive care units is expanding,” said study lead Associate Professor Zornitza Stark.

“This means we can ensure the processes and resources we develop are family centred.”

Genetic counsellors play a key role throughout the testing process, including supporting families in their decision making and providing information.

“We really appreciate families taking the time to share their experiences,” said lead author and genetic counsellor, Gemma Brett.

“This will help us better meet the needs of parents as we expand this program nationally and this type of testing becomes more routinely available.”

Access the paper here.


More news

Graphic of laptop with CTRL on the screen

Expanding research consent one ‘yes’ at a time

Australian Genomics has created a new version of its online platform CTRL (control) to enable...

June 30, 2022

Read More >

Couple with two young children, smiling at the baby on the mother's knee

Grants for Genomic Implementation Projects

Australian Genomics has funded eight new projects as part of its Genomic Implementation Projects grant...

May 30, 2022

Read More >

Mitochondrial cells

Mitochondrial donation now legal in Australia

The historic passing of the Mitochondrial Donation Law Reform (Maeve’s Law) Bill by the Australian...

March 31, 2022

Read More >


Connect with us

(03) 9936 6345
info@australiangenomics.org.au
50 Flemington Road, Parkville
Victoria 3052 Australia

In the spirit of reconciliation Australian Genomics acknowledges the Traditional Custodians of country throughout Australia and their connections to land, sea and community. We pay our respect to their elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples today.

To stay informed about our work, sign up to our newsletter

Subscribe

Quicklinks

  • Home
  • What we do
  • What we offer
  • Tools & resources
  • Our publications
  • Our project areas
  • Research we’re supporting
  • Our team

Privacy

  • We follow the Australian Privacy Principles
  • General privacy policy
  • Website privacy policies
  • Terms & conditions

Website by Blueboat.