The personal utility and uptake of genomic sequencing in pediatric and adult conditions: eliciting societal preferences with three discrete choice experiments

A study led by Dr Ilias Goranitis was recently published in Genetics in Medicine.  Dr Goranitis and colleagues from Australian Genomics elicited preferences and values from 1913 members of the Australian public to estimate the demand and value of genomic testing in childhood and adult genetic conditions. The study found substantial value, particularly for childhood conditions, where the willingness-to-pay for genomic testing ranged between $5-15k depending on the risks and benefits involved.

The study demonstrated that society values highly the diagnostic, clinical, and nonclinical benefits of genomics, which challenges the current HTA evaluation frameworks in Australia.  The findings of this study are also relevant to the current debate around the Financial Services Council’s moratorium on life insurance, which allows life insurers in Australia to request and use GS results in certain circumstances.  The study showed that the risk of disclosing test results to life insurers led up to a 10% reduction in the demand for genomic testing.

Further details and access to the article can be found here.