Ableism & Healthcare Now

A Methodological Critique of the Disability-Adjusted Life Year (DALY): Robust Science or a Symptom of Structural Ableism in Public Health?

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Table of Contents: Introduction | Disability Weights as Social Valuations | Ableism in Assessment | Interrogating Robustness | DALYs and Structural Ableism | Recommendations for Reform | Directions for Future Research | Concluding Remarks | Publication Information | References

This research brief presents a methodological critique of the disability-adjusted life year (DALY), questioning the robustness of this metric and whether it functions to uphold structural ableism in public health and healthcare. It also offers recommendations for reform and future directions for research.

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]. Disability-related 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 may (a) devalue the lives of disabled people and (b) prioritize “cures” for disability over 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]. While several prior critiques of the DALY have emphasized this issue, less attention has been given to how ableism may underlie this health metric’s broader theoretical framework and methodology.

In this research brief, I offer a methodological critique of the DALY, demonstrating how assumptions embedded in the construction of its disability weights undermine the robustness of this metric. I conclude that the DALY is a social valuation of health that currently represents a manifestation of structural ableism in global health research. I then outline a series of recommendations for addressing ableism in the DALY and propose directions for future research.

Disability Weights as Social Valuations

Years lived with disability or YLDs are one of two components used for 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 in the health disciplines as if they measure the severity of a health condition, this is an incomplete representation 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 provided 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 note 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 an important question – does asking a nondisabled person to score the health of a disabled person tell us something meaningful about disabled people’s health? Before I review the literature on this, let us consider the following example: if someone walking past a hospital were to say, ‘I have a feeling the surgeries are going just terribly in there,’ few researchers or clinicians would accept that as a meaningful outcomes assessment. So should we expect nondisabled people to accurately value health states they have never experienced firsthand?

Overall, the evidence suggests that disability weights are unreliable measures [11]. A review comparing disability weight assessment approaches 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].

There is a large amount of methodological complexity involved in the construction of disability weights [12]. However, the weights are conceptually simple. They are social valuations of health conditions, which have significant limitations when interpreted as valid or reliable measures of the severity of health outcomes, as the GBD Study applies them [9, 11–13]. Accepting that there is a degree of subjectivity in disability weight measurement leads to a critical question: are these social valuations the right ones for advancing population health and health equity?

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 to the DALY, I will now document ableism at three levels of the protocols commonly used for disability weight assessment: (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 something meaningful about a health state or if they instead 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 may also shape how researchers describe the health states used in disability weight assessment to participants. This includes: (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, arguing 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 from how many autistic people 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 validity of having nondisabled people describe health conditions on behalf of disabled people is just one example of how widely ableism may have affected 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 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 question 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 question is asked in similar ways across contexts, it could produce similar biases.

Overall, disconnecting health state descriptions from the context in which they occur is a manifestation 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].

Interrogating the DALY’s Robustness

While the GBD Study applies its disability weights as valid measures of the severity of health conditions [10], deeper in their documentation, they make clear that these measures are ultimately social valuations [9, 17, 27]. Accepting the arguments above, it is reasonable to ask: why is an ableist social valuation acceptable to the creators 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 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].

This research brief has taken on the burden of documenting ableism in the DALY. However, what if we turn this question around? What have the creators 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 demonstrate that they have taken steps to account for bias and involve disabled community members and scholars in their research.

DALYs as a Symptom of Structural Ableism in Health Policy

Globally, disabled people are 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 illustration 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 conditions. Such a result runs counter to the goal of the GBD Study and many global health efforts, which seek to invest 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. This analysis 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 experience the changes to their health states.

Recommendations for Reform

Addressing ableism in the DALY will require a multi-level approach, with five initial recommendations summarized here.

1. Centering Lived Experience in Research

One common way ableism becomes embedded in health research that involves the lived experiences of disabled, d/Deaf, chronically ill, neurodivergent, mad, and/or mentally ill people is when people who share these lived experiences are not included in the research process and leadership [39]. Addressing ableism-related bias within the methodologies underlying the DALY will require input and leadership from disabled scholars and community members.

2. Involving Disability Studies Scholars

While the term “disability” in DALY may be a misnomer [5], the expertise of disability studies scholars and other researchers who study ableism will be critical to address ableism in the DALY. The DALY describes the lived experiences of disabled, d/Deaf, chronically ill, neurodivergent, mad, and/or mentally ill people, and thus, concepts from disability studies are highly relevant. For example, crip time is a concept explored in disability studies that refers to how disabled people experience time in variable, non-normative ways [41]. As a result, a disabled person may value one year of life differently than a nondisabled person, which is a tension the DALY has not addressed. Disability studies scholars and other scholars focused on ableism could help clarify what the DALY is actually measuring. They could also help ensure the measure is constructed in ways that reflect how diverse communities of disabled, d/Deaf, chronically ill, neurodivergent, mad, and/or mentally ill people commonly understand their experiences today.

3. Conducting a Comprehensive Assessment of Ableism-Related Bias

Research to gain an understanding of ableism-related bias within the DALY should, at a minimum, consider the three levels of bias identified in this research brief. First, do self-reported disability weights from disabled, d/Deaf, chronically ill, neurodivergent, mad, and/or mentally ill people differ from those of the general population, and for which health conditions? Second, are there ableist assumptions embedded in the language and fielding of the disability weight assessments? And third, are there ableist assumptions in the approaches used to map these valuations back onto health conditions and disabilities?

4. Transitioning Away From General Population Generated Disability Weights

More broadly, stakeholders invested in the DALY should gather together with disabled researchers and community members to discuss the trade-offs between disability weights reported by the general population versus people living with a health condition. While there are issues of accuracy and reliability [23], there is also an ethical question: is it appropriate to sideline disabled people who are capable of reporting on their own health experiences?

5. Renaming the DALY

No matter how deeper issues of ableism within the DALY are addressed, the fact remains that this metric is called the “disability-adjusted life year” and it involves values on a scale of 0 to 1 that characterize the lived experiences of disabled, d/Deaf, chronically ill, neurodivergent, mad, and/or mentally ill people. The implication that perfect health, a value of 0, is nondisabled is ableist. As long as the DALY continues to measure health in this way, it should not include “disability” in its name. Changing the name would support more positive engagement with disabled researchers and community members.

Directions for Future Research

Regardless of whether reforms to the DALY are adopted in the short or long-term, research is needed to examine how estimates from past and present studies using the DALY may have been influenced by ableism-related bias. Four priority areas for future research on ableism-related bias and the DALY are proposed here.

1. Tracing the History of Disabled Stakeholder Engagement in the Development of the DALY

While multiple commentaries and reviews trace the evolution of the DALY [3], it remains unclear to what extent researchers behind the DALY have engaged with (1) disabled community members and researchers and (2) disability studies scholars and others studying ableism, since introducing the DALY in 1993. A qualitative study could be undertaken to understand this history, leveraging key informant interview and an analysis of all published DALY literature. Identifying where consultation did and did not occur can help reveal areas within the DALY methodology that may be especially susceptible to ableism-related bias.

2. Analyzing the Instruments and Algorithms Used in Disability Weight Assessment

The methodological critique presented here offers guiding questions for considering ableism within the DALY, but it does not examine the instruments, technical documents, and algorithms underlying disability weight assessments to identify specific points where ableism is manifesting. A methodological analysis applying theory from disability studies to offer a detailed analysis of ableism in these instruments, technical documents, and algorithms should be conducted. Such an analysis would identify specific methodological issues for disability weight measurement and the DALY and provide actionable recommendations for consideration by the researchers behind the DALY.

3. Comparing Disability Weights Generated for Priority Health Conditions and Disabilities

While a limited amount of prior research has compared patient-reported and general population generated disability weights [8], more work is needed to understand how disability weights vary especially for priority health conditions and disabilities that are likely to be impacted by ableism. A systematic review should be conducted for a selected group of health conditions and disabilities to understand (1) the amount of variation between patient-reported and general population reported disability weights and (2) the direction of these effects.

4. Quantifying the Effects of Uncertainty in Disability Weights on DALY Estimates

A final direction for future research is to quantify the potential impact of ableism-related bias in disability weight measurements on specific DALY estimates. Studies should be designed to produce quantitative models showing how Global Burden of Disease Study estimates [42] may change after incorporating the variation in disability weight estimates identified in the systematic review proposed above.

Concluding Remarks

Addressing ableism-related bias in the DALY is imperative for improving the reliability and accuracy of disability weights and DALYs. Inaccuracy in these metrics is an important health equity issue because health measures that fail to reflect the lived experiences of disabled people represent one pathway through which structural ableism can affect health outcomes for disabled communities [7]. Given that the original purpose of the DALY was to allocate more resources to the health of people living with disabling conditions [2], researchers using the DALY should be highly motivated to engage in this work.

Publication Information

Version History

This article was originally published on July 31, 2025 and was updated in June 2026 to combine the original critique with the recommendations and future research directions that were previously shared as a separate commentary.

Funding Statement

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 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. A Methodological Critique of the Disability-Adjusted Life Year (DALY): Robust Science or a Symptom of Structural Ableism in Public Health? Ableism & Healthcare Now. Preprint. SocArXiv. Published online July 31, 2025. DOI: 10.31235/osf.io/nzk62_v2.

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About the Author

Dielle Lundberg Avatar

Dielle Lundberg, MPH (she/her) is a Seattle-based writer and data analyst studying ableism in health care and other topics in public health. She is working to challenge structural ableism in public health and healthcare through peer-reviewed research and through independent research briefs published on this platform. She is disabled, mad and neurodivergent. She is a white, queer, and transfeminine person. Her perspectives on ableism are shaped by her lived experiences, including as a survivor of psychiatric harm, with physical disability, and with chronic illness. Read more.

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