(Other reasons for exclusion include medical conditions that might reduce life expectancy or make the transplant risky. For example, most patients who are HIV positive are not considered for an organ transplant. Current drug or alcohol abuse is grounds for exclusion, as is age, though the cutoff for eligibility differs depending on the organ needed and the transplant center considering the case.)

Joel Newman, a spokesman for UNOS, said, "In terms of managing complex aftercare and recognizing symptoms, it's up to the center to decide if there is someone who can be responsible for this. There's nothing inherent to the condition [of Down syndrome] to make them poor candidates for transplants." Newman notes that there are some people with Down syndrome (such as Sandra Jensen, the California woman who received a heart-lung transplant in 1996) who are independent enough to meet these criteria, including those who don't live with their parents. UNOS believes that each case must be considered individually, and it applauds Jensen for being a pioneer in this respect.

In the British version of the television show "Big Brother," winner Craig Phillips donated all of his prize money -- and his spotlight -- to get his friend's sister, Joanne Harris, to the United States. An 18-year-old girl with Down syndrome, she needs a heart transplant to live. In the U.K., the policy is absolute: No medical center will give a transplant to a patient with Down syndrome.

The U.S. policy is unofficial -- there's no written rule excluding people with disabilities. However, in practice, the statistic speaks for itself: Only one person with Down syndrome has ever been granted a heart transplant in this country. So will Phillips' efforts make a difference? Even if he gets Harris to the United States, the odds are virtually nil that she will get the operation she needs.

This is a fact that Amy Ostertag knows too well. Her daughter, Madison, was a year-and-a-half old when she died of heart complications. Madison's only hope would have been a heart transplant, but Ostertag's daughter was never even placed on a waiting list. "She was a joyful, brave girl who loved life," says Ostertag. "She was the center of joy for our family."

What is the value of joy? If we believe that the criteria for organ allocation represent our society's values, then it's clear that intelligence is far more important to us than behavior and personality. Be an antisocial menace to society and doctors will try to save your life -- but don't you dare have an extra chromosome.

Maybe that's easy for me to say. My mother, aunt, grandfather and husband never needed an organ transplant. But Andreas Ramos' wife, Susan Hattie Steinsapir, did. She received her transplant in January 1996 but died from complications after a few days.

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