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Emily Largent, "Disabled Bodies and Good Organs: Reducing Discrimination in Transplant Decision-Making"


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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Emily Largent, "Disabled Bodies and Good Organs: Reducing Discrimination in Transplant Decision-Making"

  1. 1. Disabled Bodies and Good Organs Emily Largent, JD, PhD, RN Assistant Professor Department of Medical Ethics and Health Policy
  2. 2. Overview • Transplants Then • Define “discrimination on the basis of disability” • Present evidence of discrimination on the basis of disability • Review legal structures governing disability and transplants • Transplants Now • Describe recent changes in the law • Identify current academic debates • Transplants Going Forward • Argue for broadening our current thinking • Discuss ways to address gaps in existing laws
  3. 3. What do I mean by “discrimination on the basis of disability” in the transplant context? • Everyone in need of a transplant is disabled by their organ failure. • Therefore, I will use “disability” to refer to situations in which an individual has an additional disability. • “Discrimination on the basis of disability” refers to situations in which: • The mere fact of disability is used to justify denial of or lower priority for an organ transplant or, • To situations in which a facially neutral screening criteria systematically disfavors people with disabilities when applied. • Also encompasses situations in which disability impermissibly influences decisions about who becomes an organ donor.
  4. 4. Unfortunately, discrimination on the basis of disability exists in the transplant context. In Access . . . . . . And In Donation
  5. 5. A variety of laws shape organ transplants to and donation by people with disabilities. National Organ Transplant Act Uniform Anatomical Gift Act Uniform Determination of Death Act Common Law re: Donation by Incompetents State Anti- Discrimination Laws ADA, Rehabilitation Act Person with Disability
  6. 6. Courts generally allow for living organ donation by individuals lacking capacity. • The following balancing test emerges from decisions: 1. the organ recipient is likely to benefit from transplantation; 2. there is no reasonably available alternative treatment that offers the recipient a comparable prospect of benefit; 3. there is no capacitated potential donor equally qualified to donate; 4. the clinical, emotional, and psychosocial risks to the donor are minimized and reasonable in relation to the expected benefits to the recipient; 5. the donor enjoys a strong personal relationship with the intended recipient; 6. there is consensus among family members in favor of donation.
  7. 7. In 2016, members of Congress petitioned the HHS Office of Civil Rights to issue guidance prohibiting disability-based transplant discrimination. • The ADA prohibits discrimination on the basis of disability in any place of public accommodation. • Individuals should not be denied or given lower priority for a transplant on the basis of disability. But, transplant programs can permissibly differentiate between candidates based on their likelihood to benefit, which may implicate disability. “People with an intellectual and/or developmental disability must not be denied life-saving organ transplants for no reason other than their disability.”
  8. 8. Some states are enacting laws to prohibit discrimination in transplantation on the basis of physical or mental disability. • Passed: • California (1996) • New Jersey (2013) • Maryland (2015) • Massachusetts (2016) • Oregon (2017) • Delaware (2017) • Kansas (2018) • Pending: • Pennsylvania • Ohio • New York
  9. 9. While these laws are symbolically significant, it is not clear that they will in fact improve the transplant experience. • “No hospital . . . [or] person shall determine the ultimate recipient of an anatomical gift based upon a potential recipient's physical or mental disability, except to the extent that the physical or mental disability has been found by a physician and surgeon, following a case-by-case evaluation of the potential recipient, to be medically significant to the provision of the anatomical gift.” California AB 2861 (1996)
  10. 10. Academics have also been arguing for changes around disability and organ transplantation.
  11. 11. Discrimination on the basis of disability in the transplant context is not a new topic but one that is getting renewed attention. Either Denied Access to Transplantation . . . . . . Or Asked to Donate to Transplant Into Others However, our thinking needs to be broader.
  12. 12. Additional steps can be considered to improve the transplant experience for people with disabilities (and the rest of us). • Ensure adherence to existing anti-discrimination law • Offer individualized assessments • Consider what it means to offer reasonable accommodations for transplant • Generate empirical data about the effects of disability on outcomes • Implement procedural protections • Consider removing local control from transplant centers • Formalize rules re: living organ donation by incapacitated individuals • Acknowledge limits of courts to make health law • Emphasize assent and err on the side of protecting donors • Revise the dead donor rule • Acknowledge that the dead donor rule is a legal fiction • Consider allowing for vital organ donation prior to death