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By Dielle Lundberg in Volume 1 —

Revisiting the Disability-Adjusted Life Year (DALY) as a Health Metric: Rigorous Science or Ableist Guesswork?

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.

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Table of Contents: Introduction | Subjective Social Valuations | Ableism in Assessment | Questioning Rigorous Science | DALYs as an Example of Structural Ableism | Concluding Remarks | Publication Information | References

Introduction

Disability-adjusted life years (DALYs) are a global health metric used widely in economic evaluation, healthcare financing, and health policy [1, 2]. The DALY combines years of life lost (mortality) and years lived with disability (morbidity) to quantify the total burden of disease and the impact of health interventions [3]. Disabled people and advocacy groups have long expressed concerns with the DALY, along with a related metric called the quality-adjusted life year (QALY) [4]. One ethical critique of these metrics is that they consider a year lived without disability to be more valuable than a year lived as a disabled person [5, 6]. The result is evaluations and decisions that (a) devalue the lives of disabled people and (b) prioritize "cures" for disability over improved quality of life for disabled people.

Structural ableism is a system that "denies disabled communities equitable access to social resources and to disability competent and affirming health services, control over whether their experiences are listened to and believed, autonomy over how their needs are represented and responded to, and justice when they are exposed to harm, discrimination, and violence" [7]. Placing greater value on the lives of nondisabled people than the lives of disabled people is one explicit example of how health metrics can function to uphold structural ableism in public health and healthcare [8]. However, ableism within the DALY runs much deeper than this, underlying this health metric's theoretical framework and methodology.

In this research brief, I offer a methodological critique of the DALY, demonstrating that ableist assumptions embedded within the construction of its disability weights undermine the validity of this metric. I conclude that the DALY is a subjective and ableist social valuation of health. Establishing this leads to two critical 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?

Disability Weights as Subjective Social Valuations

Years lived with disability or YLDs are one of two components that go into the calculation of DALYs, alongside years of life lost. The value of a YLD is quantified using a disability weight in which 1 equals death and 0 equals full health [9]. The Global Burden of Disease (GBD) Study produces disability weights for thousands of health conditions and activity limitations and describes them as measures of “the magnitude of health loss associated with specific health outcomes” [10].

While disability weights are widely applied throughout the health disciplines as if they measure the severity of a health condition, this is a gross misrepresentation of what a disability weight actually is [11]. As a systematic review on disability weights describes it, a disability weight is a "social value; it is based on preferences of a certain population" [12]. In the 1990s, when DALYs and disability weights were first introduced, disability weights were generated by 10 health professionals who generated these scores, whereas today, large population surveys are used to assess the preferences of the general public across different countries [12]. What is important to understand about disability weights is that the surveys used to create them are in almost all cases not interviewing disabled people or people living with a health condition about their lived experience with that condition.

This raises a critically important question – does asking a nondisabled person to score the health of a disabled person tell us anything meaningful about disabled people's health? The answer is no. Before I review the literature on this, consider the following example: 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?

In fact, disability weights are extremely unreliable measures [11]. A review comparing disability weight assessments found substantial differences in results for valuations of the same health condition depending on the methodology used and population involved [13]. Additionally, when disabled people and people living with health conditions have been interviewed for valuations, the results have differed markedly from the general population [8, 13]. Unsurprisingly, asking a random cohort of nondisabled people to rate the health of someone living with a particular health condition does not produce a valid measure of that person’s self-reported health.

There is a large amount of methodological complexity involved in the construction of disability weights that make them appear to be rigorous science [12]. However, disability weights are actually conceptually simple. They are subjective social valuations of health conditions, which do not in a valid or reliable way measure the severity of health outcomes, as the GBD Study claims they do [9, 11-13]. Accepting this leads to another crucial question: are these subjective valuations also ableist?

Ableism in Disability Weight Assessment

I previously published a framework for assessing ableism and equity in health state utility values [8], which serve as the equivalent to disability weights in calculating QALYs. This framework includes concepts such as: (1) the biomedical model of disability is not objective, (2) not all disabled people want to be nondisabled, (3) imagination does not equal a disabled person's experience, and (4) internalized and structural ableism may influence measures [8]. Applying this framework, I will document ableism at three levels of the disability weight assessment protocols: (a) selection of participants to complete the valuation, (b) description of health states for valuation, and (c) consideration of context where the valuation occurs.

Selection of Participants to Complete the Valuation

While numerous articles have theorized why different populations (i.e., the general public, health professionals, and patients) value health states differently [14-17], ableism – a highly plausible explanatory mechanism – is notably absent from these discussions. Ableism creates biases about disabled people that are likely to affect valuations. This includes biases such as believing that nondisabled bodies and minds are normative and socially preferable, unfamiliarity with or fear of disabled people, viewing disabled people as unproductive, tragic, or (conversely) heroic, and considering disability to be a problem that needs to be fixed [18-20].

The assumption that all (or most) disabled people would prefer to be nondisabled is empirically unsupported [21, 22] and inherently ableist [8]. It likely explains why people living with health conditions frequently value their health states more highly than the general public expects them to [23]. While disabled people do also internalize ableism, social and cultural understandings of disability – and the ableist biases that underlie them [24] – are likely to be the primary frame of reference for the general public when they make health state valuations.

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. Ableism is also a plausible explanation for the variation observed in research comparing disability weights generated by patients vs. the general public across various disabilities and health conditions [8]. This variation may occur because some experiences of disability and health are more stigmatized than others and different communities of disabled people understand and view their experiences with disability and health conditions differently than one another [7, 18].

Description of Health States for Valuation

Ableism also shapes how researchers describe the health states used in disability weight assessment to participants, in multiple ways. These include: (1) privileging the biomedical model of disability over the social model of disability (and other models), (2) applying a deficit only lens to disability, and (3) not consulting disabled people and disability studies scholars in constructing these descriptions.

First, in making modifications to its disability weight assessment protocols in 2010, the GBD Study emphasized a distinction between welfare loss and health loss, claiming that disability weights represent the latter [17]. Such positioning is intended to conceptually reduce the effect of social context on disability weight assessment. However, as defined by the World Health Organization, health is "a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity" [25]. Furthermore, as the social model of disability establishes, disability is disabling in large part because of physical, social, and structural barriers that limit activities and access, not only because of a health condition causing impairment as the biomedical model of disability suggests [26]. Claiming a health condition or disability causes limitation or impairment in cases where the social context creates these barriers is inaccurate and ableist [8, 18].

Second, the GBD Study assumes a deficit only lens toward disability throughout its health state descriptions [17]. As just one example, it describes autism as "severe problems interacting with others and difficulty understanding simple questions or directions. The person has great difficulty with basic daily activities and becomes distressed by any change in routine" and as "difficulty interacting with other people, and is slow to understand or respond to questions. The person is often preoccupied with one thing and has some difficulty with basic daily activities" [17]. Such description differs markedly from how autistic people generally speak about autism as neurodivergence, with both strengths and challenges [22].

Third, while a review of the GBD Study's engagement with disabled people and disability studies scholars is outside the scope of this brief, it is clear by the many critiques of the DALY from disabled perspectives that disabled leadership and consultation with disabled people has been limited [4, 5]. The perceived legitimacy of having nondisabled people describe health conditions on behalf of disabled people is just one poignant example of how widely accepted ableism is in this research. Involvement by disability studies scholars, in particular, would have identified these issues and helped health researchers find appropriate solutions.

Consideration of Context Where the Valuation Occurs

Health and disability are profoundly shaped by social, contextual, and structural forces, including ableism, racism, colonialism, and capitalism [27-29]. These systems influence how health and disability are experienced and understood [30]. To give an example, a disabled person living in a context where they are provided a living wage and health care is going to have a very different lived experience of health, disability, and ableism than a disabled person experiencing poverty whose basic needs are unmet [31]. This is going to shape how each person values their health. Similarly, nondisabled people may develop markedly different perceptions of disabled people's health depending on which of these people they know.

The question of whether disability weights are valid across cultures and contexts has been a longstanding concern with the DALY in the literature [32]. While many researchers argue that these weights lack cross-cultural validity, the GBD Study has reported a "high degree of consistency" in disability weight scores across countries assessed in their web surveys [33]. It remains unclear, however, to what extent their measures possess construct validity [34]. If the same biased question is asked in similar ways across contexts, it may produce consistently biased results.

Overall, disconnecting health state descriptions from the context in which they occur is an example of ableism within disability weight assessment. Doing this privileges the biomedical model of disability over the social model and ignores how the mapping of health conditions onto activity limitations will differ across social and cultural contexts and in relation to exposure to ableism [8].

Questioning a Subjective and Ableist Valuation of Health as Rigorous Science

While the GBD Study widely promotes its disability weights as valid measures of the severity of health conditions [10], deeper in the methodology (which is lengthy and likely to appear as rigorous science to the lay reader), they make clear that these measures are ultimately subjective social valuations [9, 17, 27]. Accepting the arguments above, which document ableism in disability weight assessment, it is reasonable to ask: why is a demonstrably ableist social valuation acceptable to the creators and champions of the DALY and to the health disciplines? Would we tolerate an openly sexist or classist social valuation in the same way?

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" [33]. However, protocols and algorithms based on general population data are not inherently neutral or fair [35]. 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 [36, 37]. In the case of artificial intelligence, active efforts are needed to mitigate bias [38].

In this research brief, I have taken on the burden of demonstrating the ableism embedded in the DALY. However, I want to now turn the question around: 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 GBD 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.

DALYs Are a Prominent Example of Structural Ableism in Health Policy

Disabled people have been systematically excluded from public health and healthcare leadership and policy decision-making even though their communities use and rely on these services disproportionately [39, 40]. This is one prominent example of structural ableism in public health and healthcare and a primary mechanism by which ableism becomes embedded in health policy [7].

A common pushback against having disabled people self-report their own health for the purpose of assessing disability weights is that they might consider their health states less severe than the general public would [33]. This, in turn, could result in fewer DALYs being estimated for health interventions that are aimed at preventing certain health conditions. Such a result runs counter to the goal of the GBD Study and many global health evaluation efforts, which is to demonstrate the value of investing in health interventions that prevent both morbidity and mortality [2].

Ultimately, much of this debate revolves around the question of who gets to decide which health states are worth keeping, preventing, and improving? My analysis here argues that 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.

Concluding Remarks

To some, the question of whether the DALY and the disability weights that underlie them are ableist may appear theoretical or academic. In reality, however, DALYs are used widely for public health and healthcare resource allocation, which directly affects the lives of disabled people globally [2]. While the use of the word "disability" in "disability-adjusted life year" is in many ways a misnomer that the creators of the DALY recognize as such [17], this does not change the fact that this metric continues to shape public, health system, and disciplinary understandings of what disability is and what disabled people's lives look like [5].

When I've presented this critique to scholars who are trained in health economics in the past, and we reach the point of accepting that DALYs are ableist, the most common response has been: "So what do you want us to do about it? We need a metric to help us allocate resources, and the DALY is better than nothing." While I intend to address this question in a companion piece, I want to conclude by saying that "better than nothing" is a far cry from the image of rigorous, objective science that the DALY is portrayed to be in public discourse and the scientific literature. The consequence of this is that many researchers and practitioners accept the DALY as a standard practice, without recognizing its substantial limitations.

Before we can move in good faith into discussing solutions and alternatives to the DALY from the lens of structural ableism, I believe we must first be in agreement about two key points: the DALY is a subjective social valuation – and it is ableist.

Publication Information

Author

Dielle J. Lundberg is an independent researcher and the founder of Ableism & Healthcare Now. She is a white, transfeminine person who is disabled, mad, and neurodivergent.

Funding Statement

Ableism & Healthcare Now is supported by optional subscription fees from readers. The author received no external funding for this work.

Declaration of Interests

The author has no conflicts of interest to disclose.

Disclaimer

The content is solely the responsibility of the author and does not necessarily represent the views of any other institutions, funding agencies, community organizations, or other projects the author is affiliated with or connected to presently, in the past, or in the future.

Preprint and Access Information

This research brief is Publication 1, Volume 1 of Ableism & Healthcare Now, an independent research and analysis project about structural ableism in public health and healthcare. This publication has not been peer-reviewed. It is published open-access here on the project website and available as a PDF preprint on SocArXiv to facilitate citation, archiving, and indexing.

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.

References

  1. Murray CJ, Acharya AK. Understanding DALYs (disability-adjusted life years). J Health Econ. 1997;16(6):703-730. doi:10.1016/s0167-6296(97)00004-0
  2. Murray CJL. The Global Burden of Disease Study at 30 years. Nat Med. 2022;28(10):2019-2026. doi:10.1038/s41591-022-01990-1
  3. Chen A, Jacobsen KH, Deshmukh AA, Cantor SB. The evolution of the disability-adjusted life year (DALY). Socioecon Plann Sci. 2015;49:10-15. doi:10.1016/j.seps.2014.12.002
  4. National Council on Disability. Quality-adjusted life years and the devaluation of life with disability. 2019. https://www.ncd.gov/report/quality-adjusted-life-years-and-the-devaluation-of-life-with-a-disability/
  5. Grosse SD, Lollar DJ, Campbell VA, Chamie M. Disability and disability-adjusted life years: not the same. Public Health Rep. 2009;124(2):197-202. doi:10.1177/003335490912400206
  6. Leani L, Mastroleo I. Is the use of DALYs and QALYs ethically permissible in triage decisions? COVID-19 and equity considerations from a queer-crip perspective. Ethic - Int J Moral Phylosophy. 2023;22(1):126-154. doi:10.5007/1677-2954.2023.e91703
  7. Lundberg DJ, Chen JA. Structural ableism in public health and healthcare: a definition and conceptual framework. The Lancet Regional Health - Americas. 2024;30:100650. doi:10.1016/j.lana.2023.100650
  8. Lundberg DJ. Disability and Health State Utility Values: A Framework for Assessing Ableism and Equity. Value & Outcomes Spotlight. July/August 2023;9(4):32-35. https://www.ispor.org/publications/journals/value-outcomes-spotlight/vos-archives/issue/view/global-threats-from-climate-change/disability-and-health-state-utility-values-a-framework-for-assessing-ableism-and-equity
  9. Salomon JA, Haagsma JA, Davis A, et al. Disability weights for the Global Burden of Disease 2013 study. Lancet Glob Health. 2015;3(11):e712-23. doi:10.1016/S2214-109X(15)00069-8
  10. Global Burden of Disease Collaborative Network. Global Burden of Disease Study 2021 (GBD 2021) Disability Weights. Published online 2024. doi:10.6069/485b-dx41
  11. Beresniak A, Bremond-Gignac D, Dupont D, Duru G. Reevaluating health metrics: Unraveling the limitations of disability-adjusted life years as an indicator in disease burden assessment. World J Methodol. 2025;15(1):95796. doi:10.5662/wjm.v15.i1.95796
  12. Charalampous P, Polinder S, Wothge J, von der Lippe E, Haagsma JA. A systematic literature review of disability weights measurement studies: evolution of methodological choices. Arch Public Health. 2022;80(1):91. doi:10.1186/s13690-022-00860-z
  13. Haagsma JA, Polinder S, Cassini A, Colzani E, Havelaar AH. Review of disability weight studies: comparison of methodological choices and values. Popul Health Metr. 2014;12(1):20. doi:10.1186/s12963-014-0020-2
  14. Stiggelbout AM, de Vogel-Voogt E. Health state utilities: a framework for studying the gap between the imagined and the real. Value Health. 2008;11(1):76-87. doi:10.1111/j.1524-4733.2007.00216.x
  15. Rehm J, Frick U. Valuation of health states in the US study to establish disability weights: lessons from the literature. Int J Methods Psychiatr Res. 2010;19(1):18-33. doi:10.1002/mpr.300
  16. Haagsma JA, Polinder S, Cassini A, Colzani E, Havelaar AH. Review of disability weight studies: comparison of methodological choices and values. Popul Health Metr. 2014;12(1):20. doi:10.1186/s12963-014-0020-2
  17. WHO Methods and Data Sources for Global Burden of Disease Estimates 2000-2019 (Global Health Estimates Technical Paper). Vol WHO/ DDI/DNA/GHE/2020.3. World Health Organization; 2020. https://www.who.int/docs/default-source/gho-documents/global-health-estimates/ghe2019_daly-methods.pdf
  18. Friedman C, Owen AL. Defining Disability: Understandings of and Attitudes Towards Ableism and Disability. Disabil Stud Q. 2017;37(1). doi:10.18061/dsq.v37i1.5061
  19. Friedman C. Explicit and implicit: Ableism of disability professionals. Disabil Health J. 2023;16(4):101482. doi:10.1016/j.dhjo.2023.101482
  20. VanPuymbrouck L, Friedman C, Feldner H. Explicit and implicit disability attitudes of healthcare providers. Rehabil Psychol. 2020;65(2):101-112. doi:10.1037/rep0000317
  21. Hahn HD, Belt TL. Disability identity and attitudes toward cure in a sample of disabled activists. J Health Soc Behav. 2004;45(4):453-464. doi:10.1177/002214650404500407
  22. Shaw SCK, McCowan S, Doherty M, Grosjean B, Kinnear M. The neurodiversity concept viewed through an autistic lens. Lancet Psychiatry. 2021;8(8):654-655. doi:10.1016/S2215-0366(21)00247-9
  23. Ludwig K, Ramos-Goñi JM, Oppe M, Kreimeier S, Greiner W. To What Extent Do Patient Preferences Differ From General Population Preferences? Value Health. 2021;24(9):1343-1349. doi:10.1016/j.jval.2021.02.012
  24. Heumann J, Salinas K, Hess M. Road Map for Inclusion: Changing the Face of Disability in Media. Ford Found Annu Rep. Published online 2019. https://www.fordfoundation.org/media/4276/judyheumann_report_2019_final.pdf
  25. Krahn GL, Robinson A, Murray AJ, Havercamp SM, Nisonger RRTC on Health and Function. It’s time to reconsider how we define health: Perspective from disability and chronic condition. Disabil Health J. 2021;14(4):101129. doi:10.1016/j.dhjo.2021.101129
  26. Goering S. Rethinking disability: the social model of disability and chronic disease. Curr Rev Musculoskelet Med. 2015;8(2):134-138. doi:10.1007/s12178-015-9273-z
  27. Annamma SA, Connor D, Ferri B. Dis/ability critical race studies (DisCrit): theorizing at the intersections of race and dis/ability. Race Ethnicity and Education. 2012;16(1):1-31. doi:10.1080/13613324.2012.730511
  28. Lewis TA. Working Definition of Ableism - January 2022 Update. Talila A. Lewis. January 1, 2022. Accessed November 22, 2023. https://www.talilalewis.com/blog/working-definition-of-ableism-january-2022-update
  29. Mills C, Davar B. A Local Critique of Global Mental Health. In: Grech S, Soldatic K, eds. Disability in the Global South: The Critical Handbook. Springer International Publishing; 2016:437-451. doi:10.1007/978-3-319-42488-0_28
  30. Ahad AA, Sanchez-Gonzalez M, Junquera P. Understanding and Addressing Mental Health Stigma Across Cultures for Improving Psychiatric Care: A Narrative Review. Cureus. 2023;15(5):e39549. doi:10.7759/cureus.39549
  31. Stapleton DC, O’Day BL, Livermore GA, Imparato AJ. Dismantling the poverty trap: disability policy for the twenty-first century. Milbank Q. 2006;84(4):701-732. doi:10.1111/j.1468-0009.2006.00465.x
  32. Pigeolet M, Franco H, Nussbaum L, Corlew DS, Meara J. Context matters for disability and priority setting for musculoskeletal diseases: revisiting the egalitarian approach to disability weights and disability-adjusted life-years. BMJ Glob Health. 2023;8(6):e012106. doi:10.1136/bmjgh-2023-012106
  33. Salomon JA, Vos T, Hogan DR, et al. Common values in assessing health outcomes from disease and injury: disability weights measurement study for the Global Burden of Disease Study 2010. Lancet. 2012;380(9859):2129-2143. doi:10.1016/S0140-6736(12)61680-8
  34. Lobo E, Nanda L, Akhouri SS, et al. Describing the development of a health state valuation protocol to obtain community-derived disability weights. Front Public Health. 2019;7:276. doi:fpubh.2019.00276
  35. Chen RJ, Wang JJ, Williamson DFK, et al. Algorithmic fairness in artificial intelligence for medicine and healthcare. Nat Biomed Eng. 2023;7(6):719-742. doi:10.1038/s41551-023-01056-8
  36. Gervasi SS, Chen IY, Smith-McLallen A, et al. The potential for bias in machine learning and opportunities for health insurers to address it. Health Aff (Millwood). 2022;41(2):212-218. doi:10.1377/hlthaff.2021.01287
  37. Whittaker M, Alper M, Bennett CL, et al. Disability, Bias, and AI. AI Now Institute; 2021. https://disabilitystudies.nyu.edu/disability-bias-and-ai-report/
  38. Nazer LH, Zatarah R, Waldrip S, et al. Bias in artificial intelligence algorithms and recommendations for mitigation. PLOS Digit Health. 2023;2(6):e0000278. doi:10.1371/journal.pdig.0000278
  39. Rotenberg S. Integral to inclusion: amplifying public health leaders with disabilities. Lancet Public Health. 2021;6(8):e543. doi:10.1016/S2468-2667(21)00141-9
  40. Valdez RS, Swenor BK. Structural Ableism - Essential Steps for Abolishing Disability Injustice. N Engl J Med. 2023;388(20):1827-1829. doi:10.1056/NEJMp2302561