In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities. A number of posts have provided details on discrimination in organ transplantation.
AAP: Scarcity of transplant organs does not justify excluding children with disabilities
Mindy B. Statter, M.D., M.B.E., FACS, FAAP and Garey H. Noritz, M.D., FACP, FAAP
April 20, 2020 AAP Policy
The demand for transplantable solid organs far exceeds the supply of deceased donor organs. Like the debate as to which patients will receive lifesaving interventions during the coronavirus disease 19 (COVID-19) pandemic, individual transplant programs must make eligibility determinations based on the principle of utilitarianism — doing the greatest amount of good for the greatest number of people.
Given the scarcity of solid organs for transplantation, allocation to those most likely to gain the most benefit takes into consideration both medical and psychosocial factors. Children with intellectual and developmental disabilities (IDDs) historically have been excluded as potential recipients of organ transplants.
A new AAP policy states that denying transplantation to people with disabilities on the basis of their disability and supposed lower quality of life may constitute illegal and unjustified discrimination.
The policy, Children with Intellectual and Developmental Disabilities as Organ Transplantation Recipients from the AAP Committee on Bioethics and Council on Children with Disabilities, is available at https://pediatrics.aappublications.org/content/early/2020/04/16/peds.2020-0625 and will be published in the May issue of Pediatrics.
Facts, ethical issues
The decision to initiate transplant must include consideration of both the individual’s quality of life with the diseased organ and the potentially improved quality with the transplanted organ.
The notion that children with disabilities have a lower quality of life than children with typical development is both incorrect and ethically problematic in decisions regarding organ transplantation (Albrecht GL, Devlieger PJ. Soc Sci Med. 1999;48:977-988).
Transplant success rates in patients with disabilities are as good as in the general population, so care must be taken to ensure that medical and psychosocial factors that may affect the transplant outcome are not confused with judgments of an individual’s social worth (Galante NZ, et al. Nephrol Dial Transplant. 2010;25:2753-2757).
The presence of an IDD is relevant but should not be the determinative factor.
Children without disabilities have no more claims to scarce resources, such as organ transplants, than do children with disabilities. In adhering to the ethical principles of respect for persons, utility and justice, children with IDDs should not be excluded from the potential pool of recipients and should be referred for evaluation as recipients of organ transplants, according to the policy statement. Deceased children with disabilities can be organ donors and contribute to the supply of solid organs, so it would be unfair to categorically exclude them as organ transplant recipients.
Patients should not be excluded from consideration for solid organ transplant solely on the basis of an intellectual or developmental disability.
Transplantation programs should standardize the definition and assessment of intellectual disability so that transplant decisions can be individualized, equitable and transparent. The transplant team should consider the individual’s cognitive and adaptive skills. There should be concordance among the respective solid organ transplant programs within an institution in defining IDD to avoid biases.
The transplant evaluation is a collaborative process that should occur in person rather than by medical record review. It should include caregivers such as therapists and developmental specialists who can demonstrate the patient’s degree of function, as well as professionals with expertise in the evaluation and management of individuals with intellectual disability.
Drs. Statter and Noritz are lead authors of the policy statement. Dr. Statter is a member of the AAP Committee on Bioethics. Dr. Noritz is a member of the Council on Children with Disabilities Executive Committee.