The value of genomic sequencing in complex paediatric neurological disorders: a discrete choice experiment
A new study led by Dr Ilias Goranitis and colleagues from Australian Genomics was recently published in Genetics in Medicine, the official journal of the American College of Medical Genetics and Genomics.
The study elicited preferences from 820 members of the general public in Australia to understand the value of genomic sequencing in children with complex neurological disorders of suspected genetic origin. Preferences were elicited for the attributes: (1) number of children who receive a genetic diagnosis; (2) chance of improving the process of the child’s medical care; (3) availability of treatments; (4) time until the child does the test; (5) time between test and results; (6) enabling access to other services and professional or peer support; (7) enabling access to clinical trials; and (8) cost of testing.
The study concluded that society on average would be willing to pay AU$5650 more (95% CI AU$5500 - $5800) for genomic sequencing relative to standard diagnostic care.
The study highlighted the high value that society places on all diagnostic, process, clinical, and nonclinical outcomes of genomic sequencing. These findings make another strong case for the consideration of all health and non-health outcomes in the prioritization of genomics and personalized medicine and will be used to inform a cost-benefit analysis.