Not all personal utilities are equal

Health technology assessment (HTA) bodies are increasingly asked to consider the personal utility of genomic testing: the informational, practical and psychosocial value of results beyond direct changes in clinical management. Yet treating all non-clinical benefits as normatively equivalent risks obscures the distributive task of publicly funded HTA, while refusing to consider them at all ignores forms of value that may bear on rights, equity and system design. This article offers a decision-structuring framework that distinguishes between discretionary personal utility and justice-based personal utility. The framework is expressly residual: where a benefit can already be captured through conventional HTA domains, such as health-related quality of life, avoided downstream costs, caregiver effects or standard clinical utility, it should be counted there rather than relabelled as personal utility. I then identify a third category, derivative value, for constructs such as hope value and option value whose realisation depends on future scientific, institutional or policy contingencies external to the patient. The framework does not supply an algorithm for reimbursement. Instead, it clarifies burden of justification, guards against double-counting and helps HTA bodies separate patient-indexed claims from broader public-value arguments. Applied to diagnostic genomic testing for childhood hearing impairment, the framework shows how some commonly invoked benefits are better treated as discretionary, others as justice-relevant and others as requiring separate policy justification. I conclude with practical steps that analysts and policy leaders can adopt now: residual-domain mapping, non-duplication checks, structured scenario analyses and deliberative documentation of contested classifications

Documentation · Health technology · Normative · Psychosocial · Realisation · Utilitarianism · BRCA gene mutations in cancer · Genomics and Rare Diseases · Health Systems, Economic Evaluations, Quality of Life

• Just Health

  Open Access•Norman Daniels•Just Health•2007

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