New Research Brief Exposes Ableism in the DALY, an Influential Metric in Global Health and Health Economics
"Revisiting the Disability-Adjusted Life Year (DALY) as a Health Metric: Rigorous Science or Ableist Guesswork?" is available to read online and as a PDF preprint on SocArXiv.
Abstract
This research brief presents a methodological critique of the disability-adjusted life year (DALY), questioning the validity of this metric and arguing that it functions to uphold structural ableism in public health and healthcare. I establish first that the disability weights underlying the DALY are subjective social valuations of health states and are not valid measures of “the magnitude of health loss associated with specific health outcomes” as the Global Burden of Disease Study claims. I then document ableism throughout the assessment protocols used in creating the disability weights for the DALY at the levels of (a) selection of participants to complete the valuation, (b) description of health states for valuation, and (c) consideration of context where the valuation occurs. I conclude the research brief by examining two questions. First, why have the creators of the DALY and its champions positioned a subjective and ableist social valuation as rigorous science? And second, what does the widespread acceptance of the DALY across health disciplines reveal about the pervasiveness of structural ableism in health policy?
Key Takeaways
If someone walking past a hospital were to say, ‘I bet the surgeries are going just terribly in there,’ no researcher or clinician would accept that as a meaningful outcomes assessment. So why do we consider nondisabled people’s valuations of health states they have never experienced to be valid?
Without lived experience, it is unclear if disability weights measure anything meaningful about a health state or if they simply capture the extent to which a health state is socially stigmatized, devalued, feared, and/or misunderstood.
The creators and champions of the DALY argue that "in a democratic society, the views of the general public are relevant in comparative assessments that inform public policy". However, protocols and algorithms based on general population data are not inherently neutral or fair. As demonstrated in the field of machine learning, algorithms trained on such data often produce highly biased and discriminatory results for minority groups, including disabled people.
What have the creators and champions of the DALY done to ensure that their protocols for assessing disability weights are not ableist and discriminatory towards disabled people? Rather than assuming these methods are neutral and fair, the [Global Burden of Disease] Study and connected researchers should have a responsibility to show that they have taken steps to account for bias and to involve disabled people in their research.
How much we value prevention and "cures" for specific health conditions overall, along with improvements for particular symptoms, should be determined by people with lived experience of the health condition and/or disability. The justification for this is straightforward: these individuals are the ultimate beneficiaries of the services and interventions being designed, and they are the ones who will actually experiences the changes to their health states.
Author
Dielle J. Lundberg is an independent researcher and the founder of Ableism & Healthcare Now.
Suggested Citation
Lundberg DJ. Revisiting the Disability-Adjusted Life Year (DALY) as a Health Metric: Rigorous Science or Ableist Guesswork? Ableism & Healthcare Now. Preprint. SocArXiv. Published online July 31, 2025. DOI: 10.31235/osf.io/nzk62_v1.