Is intellectual disability a reason to deny an organ transplant?

A 3-year-old girl who was allegedly denied an opportunity for a kidney transplant because she was “mentally retarded” has sparked a debate in the US media. Amelia Rivera has a rare genetic disease known as Wolf-Hirschhorn Syndrome that can cause mental impairment, seizures and kidney failure. However, her parents were told by doctors at Children's Hospital of Philadelphia that there would be no transplant. Her mother, Chrissy Rivera, was enraged and posted her version of a conversation with the doctor and a social worker on a blog.

 “So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”

“Yes, [said the doctor]. This is hard for me, you know.”

Mrs Rivera says that she offered to find a matching kidney in her large extended family, but the doctor flatly refused: “She is not eligible  because of her quality  of life. Because of her mental delays.”

The hospital refused to comment on the incident but insists that it “does not disqualify potential transplant candidates on the basis of intellectual abilities." However, children with developmental delays are complicated to care for and may have a greatly reduced life expectancy. Hence, hospitals may prefer to allocate scarce organs to children who have a greater chance of survival. The Washington Post found that American hospitals had no consistent policy on allocating organs to children who are intellectually disabled.

The story went viral  and prompted a column by leading bioethicist Art Caplan, of the University of Pennsylvania. He pointed out that:

“There are reasons why anyone with an intellectual or physical disability might not be considered a good candidate for a transplant.  But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases.”

The issue is still not settled. The Riveras are to meet officials from the Children's Hospital of Philadelphia next week. ~ cbsnews.com, Jan 17

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