Restoring the value of knowing: towards the standardisation of personal utility assessments for genomic testing technologies
Gabriel Watts1, Ainsley Newson1, Sydney Health Ethics Sydney 1Sydney Health Ethics, Sydney, NSW, Australia
Abstract
There is growing concern that health technology assessment (HTA) frameworks do not adequately capture the value of certain novel diagnostic technologies, especially those utilising next generation genomic sequencing (NGS). Of particular concern is that the personal utility of diagnostic technologies – i.e. the subjective nonhealth value that patients attribute to diagnostic technologies – ought to be explicitly recognised within HTA frameworks. If the so-called ‘value of knowing’ is not recognised, there is a risk that NGS technologies may fail to meet HTA evidentiary benchmarks. At the same time, however, advocates of expanded HTA value frameworks have lamented the lack of consensus regarding what ought to count as the personal utility of diagnostic interventions, again especially for NGS.
In this paper, we set out what is needed for the standardisation and ethical defensibility of personal utility assessments in HTA. We first identify and critique a trend towards ever more ‘comprehensive’ conceptions of personal utility within the value frameworks of HTAs, for example, that used by Australia’s Medical Services Advisory Committee. Against this trend, we then argue that consideration of personal utility beyond the reduction of diagnostic uncertainty, relative to the index patient, is generally not justified in HTA contexts. That is, there should be a deliberately restrictive approach to the inclusion of subjective nonhealth outcomes as a distinct domain of value in HTAs.
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