질병과 장애가 있는 삶은 덜 가치 있는가?: 약제급여 평가상 질보정수명(QALY) 활용의 윤리적 쟁점

초록

The use of the Quality-Adjusted Life Year (QALY) in pharmaceutical reimbursement assessments involves complex ethical issues related to the quantification and valuation of life. Integrating insights from Science and Technology Studies (STS) and disability studies into a bioethical analysis, the paper aims to uncover the normative assumptions and structural biases embedded in quality-of-life measures. The paper first outlines the structure of cost-effectiveness evaluation and reviews the theoretical foundations of the QALY—a metric that reduces the incommensurable value of life to comparable numerical units. The analysis then reveals how this commensuration process systematically undervalues the lives of people with disabilities, identifying three key ethical concerns: First, sociomaterial barriers lead to the systematic underestimation of quality of life with disability, resulting in decontextualized scores being misinterpreted as “intrinsic properties” of disabled bodies. Second, when non-disabled members of the public “imagine” life with disability to estimate preferences, ableist assumptions become embedded within quality weights. Third, these sociomaterial barriers and ableist prejudices are recursively incorporated into the QALY framework, creating a self-reinforcing feedback cycle that amplifies existing inequities. Ultimately, the analysis demonstrates that the invisible assumptions embedded in QALY-based commensuration operate across sociomaterial, epistemic, and bodily domains, generating multilayered and cumulative forms of injustice.

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