Historically, children with intellectual and developmental disabilities (IDD) have been excluded as recipients of organ transplants. Denying transplantation to people with disabilities based on their disability and supposed lower quality of life may be illegal and discriminatory, according to an American Academy of Pediatrics (AAP) policy.1
“Since the demand for organs exceeds the supply, organ transplant programs must use various ethical principles to decide who receives an organ,” says Garey Noritz, MD, FAAP, FACP, one of the policy statement’s authors.
An important ethical principle is utility, the desire to maximize benefit for the greatest number of people. Those with IDD have been excluded from transplants for two reasons: They are less likely to be able to handle the post-transplant regimen of medications and follow-up, and they cannot derive as much benefit from the organ because they already have a lower quality of life.
“Good research indicates that neither of these are true. In essence, this has discriminated against people with IDD, violating the ethical principle of justice,” says Noritz, division chief at the Complex Health Care Program at Nationwide Children’s Hospital Columbus (OH). The policy recommends transplant centers:
- not exclude children from transplant consideration based solely on IDD;
- use standardized definitions of intellectual disability so transplant decisions will be individualized, equitable, and transparent;
- consider the individual’s cognitive and adaptive skills;
- evaluate children for transplant in person instead of by medical record review;
- include caregivers who can demonstrate the patient’s degree of function and professionals with expertise evaluating individuals with intellectual disability.
Noritz adds those without disabilities are no more entitled to limited resources like organ transplants than anyone else.
In addition, children with disabilities can be organ donors, contributing to the supply. Thus, Noritz argues, excluding these patients as organ recipients would not be fair.
Transplant programs decide who they will list based on both medical and psychosocial criteria. The fact a person has an IDD is a relevant factor. “But it is important to evaluate them in the context of how they function in their environment and what kinds of supports they have from family and other caregivers,” Noritz stresses.
Many programs are moving in this direction. The policy statement’s authors hope it will prompt programs to standardize the definition and assessment of people with IDD to ensure fair access to organ transplants for all. “Transplant centers should be transparent and accountable for their candidacy decisions,” Noritz says.
If an organ transplant can provide major health benefits, rejecting otherwise eligible patients with disabilities may be discriminatory and illegal, Noritz adds.
Currently, transplant programs vary on whether children with IDD are considered candidates for whole organ transplants. “To automatically exclude such children without a nuanced assessment of their individual medical and social circumstances violates the principle of justice and supports ableist assumptions of what maximizing benefit means,” says Leslie M. Whetstine, PhD, a bioethicist at Aultman Hospital in Canton, OH, and a professor of philosophy at Walsh University.
The AAP policy statement indicates the previous approach of frank exclusion of children with IDD should be re-evaluated. It considers how such an approach may violate ethical and legal standards (including the Americans with Disabilities Act and The Rehabilitation Act). The policy statement calls for consistency in defining IDD, an assessment of the role of adaptive functioning, and a recognition of the limitation of quality-of-life judgments. Whetstine notes the policy does not consider IDD completely irrelevant, but the authors do not consider IDD to be dispositive for listing decisions either.
Implementation of the new policy could ensure a more equitable and transparent process. “Children can be thoroughly evaluated in multiple domains that extend beyond their IDD,” Whetstine adds.
- Statter MB, Noritz G. Children with intellectual and developmental disabilities as organ transplantation recipients. Pediatrics 2020;145:e20200625.