This article proposes a novel strategy, one that draws on insights from antidiscrimination law, for addressing a persistent challenge in medical ethics and the philosophy of disability: whether health systems can consider quality of life without unjustly discriminating against individuals with disabilities. It argues that rather than uniformly considering or ignoring quality of life, health systems should take a more nuanced approach. Under the article's proposal, health systems should treat cases where (1) quality of life suffers because of disability-focused exclusion or injustice differently from cases where (2) lower quality of life results from laws of nature, resource scarcity, or appropriate tradeoffs. Decisionmakers should ignore quality-of-life losses that result from injustice or exclusion when ignoring them would improve the prospects of individuals with disabilities; in contrast, they should consider quality-of-life losses that are unavoidable or stem from resource scarcity or permissible tradeoffs. On this proposal, while health systems should not amplify existing injustice against individuals with disabilities, they are not required to altogether ignore the potential effects of disability on quality of life.
Get full access to this article
View all access options for this article.
References
1.
T.M.John, J.Millum, and D.Wasserman, “How to Allocate Scarce Health Resources Without Discriminating Against People with Disabilities,”Economics and Philosophy33, no. 2 (2017): 161-184.
2.
N.Beckstead and T.Ord, “Bubbles Under the Wallpaper: Healthcare Rationing and Discrimination,” in Bioethics: An Anthology, ed. H.Kühse, U.Schüklenk, and P.Singer (West Sussex, UK: Wiley-Blackwell, 2016): 406.
3.
S.Kerstein, “Dignity, Disability, and Lifespan,”Journal of Applied Philosophy34, no. 5 (2017): 635; G. Persad, A. Wertheimer, and E.J. Emanuel, “Standing by Our Principles: Meaningful Guidance, Moral Foundations, and Multi-Principle Methodology in Medical Scarcity,” American Journal of Bioethics 10, no. 4 (2010): 46-47.
4.
P.Menzel, “How Should what Economists Call ‘Social Values’ Be Measured?”The Journal of Ethics3, no. 3 (1999): 250-263.
5.
M.E.Chernew, A.B.Rosen, and A.M.Fendrick, “Value-Based Insurance Design,”Health Affairs26, no. 2 (2007): w195-w203; S.D. Sullivan et al., “Design, Implementation, and First-Year Outcomes of a Value-Based Drug Formulary,” Journal of Managed Care & Specialty Pharmacy 21, no. 4 (2015): 269-275.
6.
A.B.Symons, D.McGuigan, and E.A.Akl, “A Curriculum to Teach Medical Students to Care for People with Disabilities: Development and Initial Implementation,”BMC Medical Education9, no. 1 (2009): 78.
7.
Fair Housing Council of San Fernando Valley v. Roommate. com, LLC, 2012. 666 F.3d 1216, 1221 (9th Cir.).
8.
E.F.Emens, “Intimate Discrimination: The State's Role in the Accidents of Sex and Love,”Harvard Law Review122, no. 1307 (2009): 1340, 1356, 1374-1377; L. Halldenius, “Dissecting ‘Discrimination,’” Cambridge Quarterly of Healthcare Ethics 14, no. 4 (2005): 456.
9.
P.Dua, M.F.Heiland, A.C.Kracen, and T.L.Deshields, “Cancer‐Related Hair Loss: A Selective Review of the Alopecia Research Literature,”Psycho-Oncology26, no. 4 (2017): 438; A. Lateef and S. Marshall-Lucette, “Living with Trimethylaminuria (TMAU) from an Adult Viewpoint,” Practice Nursing 28, no. 8 (2017): 344-351; See Emens, supra note 8.
10.
See Emens, supra note 8.
11.
Palmore v. Sidoti, 1984. 466 U.S. 429, 433-34; M.A.Stein, “Mommy has a Blue Wheelchair: Recognizing the Parental Rights of Individuals with Disabilities,”Brooklyn Law Review60, no. 3 (1994): 1097.
12.
Adarand Constructors, Inc. v. Pena, 1995. 515 U.S. 200, 237.
13.
D.A.Strauss, “Discriminatory Intent and the Taming of Brown,”University of Chicago Law Review56, no. 3 (1989): 982–983.
14.
T.Schrecker, “Denaturalizing Scarcity: A Strategy of Enquiry for Public-Health Ethics,”Bulletin of the World Health Organization86 (2008): 600, 603.
15.
G.C.Persad and E.J.Emanuel, “Dilemmas in Access to Medicines: A Humanitarian Perspective — Authors' Reply,”The Lancet389, no. 10073 (2017): 1008.
16.
E.Barnes, The Minority Body (New York, NY: Oxford University Press, 2016).
17.
See Barnes, supra note 16, 27.
18.
See Barnes, supra note 16.
19.
See Barnes, supra note 16, 102.
20.
C.T.Solberg and E.Gamlund, “The Badness of Death and Priorities in Health,”BMC Medical Ethics17, no. 1 (2016): 21.
21.
K.Lippert-Rasmussen, “Two Puzzles for Deontologists: Life-Prolonging Killings and the Moral Symmetry Between Killing and Causing a Person to be Unconscious,”The Journal of Ethics5, no. 4 (2001): 385.
S.M.Campbell and J.A.Stramondo, “The Complicated Relationship of Disability and Well-Being,”Kennedy Institute of Ethics Journal27, no. 2 (2017): 157.
30.
J.B.Jordan and G.C.Vanderheiden, “Modality-Independent Interaction Framework for Cross-Disability Accessibility,” in Cross-Cultural Design: Methods, Practice, and Case Studies, ed. P.L. PatrickRau (Beijing, China: Tsinghua University, 2013): 218-222.
31.
Olmstead v. L.C. 1999. 527 U.S. 581, 597.
32.
S.R.Bagenstos. “Disability Rights and Labor: Is This Conflict Really Necessary?”Indiana Law Journal92, no. 277 (2016): 285-287.
33.
See John et al., supra note 1, 17.
34.
D.A.Weisbach, “Toward a New Approach to Disability Law,”University of Chicago Legal Forum1, no. 47 (2009): 68-69.
35.
A.M.Samaha, “What Good is the Social Model of Disability?”University of Chicago Law Review74, no. 4 (2007): 1275-1306.
36.
See Samaha, supra note 35.
37.
E.F.Emens, “Integrating Accommodation,”University of Pennsylvania Law Review156 (2008): 839, 842.
38.
G.A.Cohen, Rescuing Justice and Equality (Cambridge, UK: Harvard University Press, 2008): 154-155, 165-166.
39.
See John et al., supra note 1, 18.
40.
See John et al., supra note 1, 21.
41.
A.Zwerling, D.Dowdy, A.Von Delft, H.Taylor, and M.W.Merritt, “Incorporating Social Justice and Stigma in Cost-Effectiveness Analysis: Drug-Resistant Tuberculosis Treatment,”International Journal of Tuberculosis and Lung Disease21, no. 1 (2017): S71.
42.
L.Esposito and N.Hassoun, “Measuring Health Burden Without Discriminating Against the Disabled,”Journal of Public Health39, no. 3 (2016): 635-636.
43.
See Esposito et al., supra note 42.
44.
See Esposito et al., supra note 42.
45.
See Menzel, supra note 4.
46.
S.Verguet, R.Laxminarayan, and D.T.Jamison, “Universal Public Finance of Tuberculosis Treatment in India: An Extended Cost-Effectiveness Analysis,”Health Economics24, no. 3 (2015): 318.
47.
H.F.Chang, “A Liberal Theory of Social Welfare: Fairness, Utility, and the Pareto Principle,”Yale Law Journal110, no. 2 (2000): 215.
