Valuing the economic benefits of genetic testing interventions: when maximising health is not enough

Abstract: The National Institute for Health and Clinical Excellence (NICE) has developed discrete appraisal processes for health technologies and public health interventions and assumes in both instances that the primary objective is to improve health status. This may be problematic on two levels. An intervention may not fit into one of the current appraisal systems and/or maximising health is not a key objective.  This paper presents findings from an empirical study that used clinical genetics testing services as a case study and example of a complex intervention to identify: (i) the core domains that comprise both health and non-health aspects of benefits (ii) if it is possible to evaluate such an intervention using current NICE appraisal processes. The stated objective for the majority of genetic services, as defined by a patient and healthcare professional sample, was to empower patients rather than improve/maximise health. I will propose some possible options about how best to produce guidance for the effective and cost effective use of healthcare interventions that do not fit into the current NICE appraisal processes. The normative answer about which of the proposed options should be preferred is not clear. To further understanding and generate empirical evidence to support which option is the second best approach requires flexible valuation methods.