Research and Scholarship

Organ Transplants for Children With Profound Intellectual Disabilities

Examining the Ethical Considerations in Policy Decisions

Prior to the 1990s, children were denied access to solid organ transplantation due to intellectual disability. Reasons cited include reduced life expectancy, a lack of cognitive ability to understand transplantation and comply with the required post-transplant therapy, a lack of improvement in quality of life and the scarcity of available organs.

Since 1995, the American Society of Transplant Physicians guidelines state that cognitive impairment should be considered a contraindication to transplantation only when it is so severe as to impair compliance with essential medication regimens and no caregiver is available to compensate for the individual’s limitations. Yet a 2006 survey of pediatric transplant centers reported that 56% of transplant centers would consider an IQ of less than 35 a relative contraindication to solid organ transplantation and 38% of centers reported at least one patient who had been evaluated and was not listed for transplant but would have, but for the presence of intellectual disability.

Pediatric nephrologist and bioethics faculty Dr. Aaron Wightman, along with bioethics faculty Dr. Douglas Diekema and other collaborators, have analyzed data from the UNOS database to identify pediatric recipients of heart, liver or kidney transplant with intellectual disabilities. They found that children with intellectual disabilities comprise a significant minority of pediatric transplant recipients (up to 24% for heart, 15% for liver and 16% for kidney). These recipients had early (3–5 year) patient and allograft survival that were no different than the intellectually normal pediatric recipients. Similarly, for heart and liver transplantation there was no difference between groups in improvement in functional status. 

Wightman and collaborators have used the empirical data to further explore normative arguments for and against inclusion of this population in solid organ transplant along with other considerations such as donor source and risk to transplant centers and the consideration of other forms of renal replacement therapies.

This project provides the first national large-scale description of children with intellectual disability who underwent solid organ transplantation. There is no evidence to support assumptions that children with disabilities have any lower benefit than any other patient on the wait list. Fairness requires that we avoid discriminating between individuals on morally irrelevant grounds and apply criteria to all in an equal manner. Policy decisions to not offer a transplant to a child with profound intellectual disabilities, then, perhaps reflect social values rather than medical factors and are in violation of guidelines intended to assure equal access to care.

“Solid organ allocation policies represent a clear application of rationing and require a balance of the principles of utility and justice. Our work seeks to inform and improve the development of ethical policies for organ allocation for children.”

Dr. Aaron Wightman

Ultimate Goal

To determine the relevant factors to weigh for children with intellectual disabilities to guide policy decision for organ transplants.

Primary Collaborators

  • Miranda Bradford, Evelyn Hsu, Jodi Smith, Seattle Children’s
  • Heather Bartlett, University of Wisconsin School of Medicine and Public Health
  • Michael Freeman, Penn State Hershey University School of Medicine
  • Aviva Goldberg, University of Manitoba

Funding

Representative Publications