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Preferences and values for rapid genomic testing in critically ill infants and children: a discrete choice experiment
Ilias Goranitis1,2,3, Stephanie Best4,5,6, John Christodoulou4,5,7
1Health Economics Unit, Centre for Health Policy, Melbourne School of Population and Global Health, University of Melbourne, Melbourne, VIC, Australia. ilias.goranitis@unimelb.edu.au.
Insights
Rapid genomic testing for critically ill children offers significant value, with the public willing to pay more for faster results. This evidence supports its implementation in healthcare systems.
Area of Science:
- Genomics
- Healthcare Economics
- Pediatric Critical Care
Background:
- Healthcare systems face challenges in implementing rapid genomic testing for critically ill children due to a lack of evidence on its value.
- Understanding patient and public preferences is crucial for optimal integration of genomic technologies.
Purpose of the Study:
- To elicit preferences and values for rapid genomic testing in critically ill children.
- To inform cost-benefit analyses for healthcare system implementation.
Main Methods:
- A discrete choice experiment survey was conducted with the Australian public and families with lived experience.
- Bayesian D-efficient design and panel error component mixed logit models were used for data analysis.
- Latent class models and fractional logistic regressions explored preference heterogeneity.
Main Results:
- Both the public and families prioritized higher diagnostic yield, clinical utility, faster turnaround times, and lower costs.
- The public would pay an additional AU$9510 for rapid (2-week) and AU$11,000 for ultra-rapid (2-day) genomic testing.
- Families with lived experience indicated willingness to pay AU$10,225 for rapid and AU$11,500 for ultra-rapid testing.
Conclusions:
- Rapid genomic testing for critically ill children with rare conditions generates substantial utility.
- Findings provide evidence to support cost-benefit analyses for implementing rapid genomic testing in healthcare.
- Willingness-to-pay estimates highlight the perceived value of faster genomic diagnostic turnaround times.
Abstract:
Healthcare systems are increasingly considering widespread implementation of rapid genomic testing of critically ill children, but evidence on the value of the benefits generated is lacking. This information is key for an optimal implementation into healthcare systems. A discrete choice experiment survey was designed to elicit preferences and values for rapid genomic testing in critically ill children. The survey was administered to members of the Australian public and families with lived experience of rapid genomic testing. A Bayesian D-efficient explicit partial profiles design was used, and data were analysed using a panel error component mixed logit model. Preference heterogeneity was explored using a latent class model and fractional logistic regressions. The public (n = 522) and families with lived experiences (n = 25) demonstrated strong preferences for higher diagnostic yield and clinical utility, faster result turnaround times, and lower cost. Society on average would be willing to pay an additional AU$9510 (US$6657) for rapid (2 weeks results turnaround time) and AU$11,000 (US$7700) for ultra-rapid genomic testing (2 days turnaround time) relative to standard diagnostic care. Corresponding estimates among those with lived experiences were AU$10,225 (US$7158) and AU$11,500 (US$8050), respectively. Our work provides further evidence that rapid genomic testing for critically ill children with rare conditions generates substantial utility. The findings can be used to inform cost-benefit analyses as part of broader healthcare system implementation.

