“I couldn’t even believe this would happen,” Karen Corby said, “that this would be the reason in this day and age.”
In fact, mentally disabled people are turned down for organ transplants often enough that their rights are a rapidly emerging ethical issue in this corner of medicine, where transplant teams have nearly full autonomy to make life-or-death decisions about who will receive scarce donor organs and who will be denied.
Beyond some restrictions imposed by laws such as the Americans With Disabilities Act, the doctors, nurses, psychologists and social workers at 815 U.S. transplant programs are free to take neurocognitive disabilities such as autism into consideration any way they want.
As a result, there is wide variation from program to program. Some teams weigh mental and psychological issues heavily in deciding whether someone should be eligible for the precious gift of a heart, liver, kidney or lung. Others do not. A few even admit that they automatically rule out people with certain disabilities. Some patients are rejected at one medical center but accepted at another.
“As a society, we want individual transplant centers to maintain discretion about putting people on their list or not. We don’t want government playing doctor at the bedside,” said Scott Halpern, an ethicist at the University of Pennsylvania medical center that rejected Corby. “Having said that, the current system lacks the accountability that we might wish it to have. There are virtually no checks and balances on the decisions that transplant centers make.”