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Govind Persad, "Considering Quality of Life While Repudiating Disability Injustice: The Pathways Approach to Priority-Setting"


Published on

June 1, 2018

Historically and across societies people with disabilities have been stigmatized and excluded from social opportunities on a variety of culturally specific grounds. These justifications include assertions that people with disabilities are biologically defective, less than capable, costly, suffering, or fundamentally inappropriate for social inclusion. Rethinking the idea of disability so as to detach being disabled from inescapable disadvantage has been considered a key to twenty-first century reconstruction of how disablement is best understood.

Such ‘destigmatizing’ has prompted hot contestation about disability. Bioethicists in the ‘destigmatizing’ camp have lined up to present non-normative accounts, ranging from modest to audacious, that characterize disablement as “mere difference” or in other neutral terms. The arguments for their approach range from applications of standards for epistemic justice to insights provided by evolutionary biology. Conversely, other bioethicists vehemently reject such non-normative or “mere difference” accounts, arguing instead for a “bad difference” stance. “Bad difference” proponents contend that our strongest intuitions make us weigh disability negatively. Furthermore, they warn, destigmatizing disability could be dangerous because social support for medical programs that prevent or cure disability is predicated on disability’s being a condition that it is rational to avoid. Construing disability as normatively neutral thus could undermine the premises for resource support, access priorities, and cultural mores on which the practice of medicine depends.

The “mere difference” vs. “bad difference” debate can have serious implications for legal and policy treatment of disability, and shape strategies for allocating and accessing health care. For example, the framing of disability impacts the implementation of the Americans with Disabilities Act, Section 1557 of the Affordable Care Act, and other legal tools designed to address discrimination. The characterization of disability also has health care allocation and accessibility ramifications, such as the treatment of preexisting condition preclusions in health insurance. The aim of this conference was to construct a twenty-first century conception of disablement that resolves the tension about whether being disabled is merely neutral or must be bad, examines and articulates the clinical, philosophical, and practical implications of that determination, and attempts to integrate these conclusions into medical and legal practices.

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Govind Persad, "Considering Quality of Life While Repudiating Disability Injustice: The Pathways Approach to Priority-Setting"

  1. 1. Considering Quality of Life While Repudiating Disability Injustice: The Pathways Approach to Priority-Setting Govind Persad, PhD, JD Assistant Professor Berman Institute of Bioethics and Department of Health Policy and Management Bloomberg School of Public Health Johns Hopkins University
  2. 2. The “QALY Trap” • QALY: quality x quantity • Example: liver transplant for someone with paraplegia (John et al.) – Deepak: 20 yrs @ 0.55 quality = 11 QALYs – Valentina: 20 yrs @ 1.00 quality = 20 QALYs • Many object to the use of QALYs in priority-setting because they disadvantage people with preexisting disabilities (“double jeopardy”). • Yet QALYs are a powerful priority-setting tool and recognize important values
  3. 3. The “QALY Trap”: existing solutions • Ignore quality of life assessments (Persad et al. 2009; Kerstein) • Accept disability discrimination (Ord & Beckstead) – Seem unsatisfactory
  4. 4. The “QALY Trap”: existing solutions • Prioritarian: Assign higher priority to people who experienced lower QoL in past. Offsets lower priority due to lower future QoL. (John, Millum, Wasserman) – Problem: equivalent to traditional QALY approach when QoL-lowering disability was recently acquired • Assign greater weight to QoL improvements for the worst off (Merritt) • Make quantity “lexically” prior (Esposito, Hassoun)
  5. 5. The Pathways Approach • Allow consideration of lower QoL due to disability when the loss of QoL: – Results from unpreventable disadvantage – Results from fair response to scarcities/tradeoffs – Results from transition costs • Don’t consider lower QoL when loss of QoL: – Results from private aversions – Results from disability-focused injustice • Priority-setting is not just about optimizing a welfare function
  6. 6. Unavoidably disadvantaging disabilities • Death: deprives individuals of experience and agency – Anencephaly, coma: experience – Profound mental disabilities, advanced dementia: agency • Severe pain • Claim: severe pain, loss of experience, loss of agency are net disadvantages regardless of how we arrange the social world – Doesn’t entail that inability to have certain types of experiences is a net disadvantage
  7. 7. Unjust-to-prevent disadvantages • Tradeoffs among people with different disabilities – Web design example – Ramp example from Leslie and Anita’s paper • Tradeoffs between disability accommodation and other values – Education for general-education students, wages for service workers, other social goals • Claim: some disadvantages that result from interaction of a given disability with the social world would be unjust to prevent
  8. 8. Private aversions • Acceptable: dating preferences • Objectionable, but wrong to legally prohibit: private associational choices • Claim: While the effects of private aversions can be disadvantaging, societal decisionmakers setting priorities should ignore QoL impacts that result from private aversions – Parallel with Palmore v. Sidoti – “giving effect to private bias”
  9. 9. Unjust policies • Claim: When setting priorities, we should ignore expected lower future QoL that results from: – Policies motivated by animus against people with disabilities – Insufficient accommodations for people with disabilities (as settled by background theory) • Injustice producing lower QoL must be disability- focused—unjust background scarcity is not enough
  10. 10. Modularity • Could combine Pathways Approach with prioritarianism suggested by John et al. • Could ”plug in” a variety of background theories of what assistance people with disabilities are entitled to
  11. 11. Other pathways approaches • Count QoL decreases that are due to allowable private aversions (e.g. dating preferences) • Assign lower weight to QoL decreases that are due to aversions or injustice, rather than ignoring them altogether • Don’t count QoL decreases that stem from background injustice, even when not disability focused • Don’t count any QoL decreases because they wouldn’t exist under ideal circumstances—all are ”cosmically unjust” (“[GA] Cohen-inspired”)