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A genetic death sentence | 1, 2, 3, 4


How would Ramos have felt if someone with Down syndrome had received a heart transplant that might have otherwise gone to his wife? "If it was up to me to decide," he said, "I'd give an organ to someone who contributes to the community rather than to someone who is dependent. The opposite decision would be quite unethical to me."

But how do you evaluate a person's contribution to the community? How can the family of someone with Down syndrome accept that their son, daughter, sister or uncle doesn't have as much to give as Ramos' wife?




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Philip Atkinson, whose 10-year-old daughter, Katie, has Down syndrome, is preparing for her death. She was denied a place on the waiting list for a heart transplant. As far as his daughter's contribution is concerned, Atkinson says he "wouldn't have missed the experience [of Katie] for the world. Most people don't feel this kind of love in their lifetime. I feel everything for her, and it hurts so much it's unreal."

Dr. Arthur Caplan, author of "Ethics and Organ Transplants," sympathizes with Atkinson. "There is no excuse for not transplanting a person with Down syndrome unless the condition itself makes compliance a problem, or if the person has acquired infections which would make immunosuppression fatal. Any other reason not to transplant is discriminatory," he says. "That said, people with Down syndrome are discriminated against all the time."

Many parents of children with this condition are outraged by the criteria used to gauge whether their children deserve a spot on the waiting list. (They are judged according to an individual transplant center's opinions of how independent the patient can become and his or her mental capabilities, ability to self-report symptoms and predicted compliance with medication and therapy. This is true whether the patient is an infant or a young child, even though it is not possible to predict how independent an infant will become, nor his or her intellectual potential.)

Says Galen Witt, who has a 6-year-old daughter with Down syndrome, "The value systems almost never include social, emotional or spiritual dimensions. It is often in these dimensions that people with disabilities like Down syndrome may excel. These are not objectively measurable traits and, therefore, are easy to ignore when [transplant centers] make a decision."

Atkinson suggests, as has been proposed numerous times before Congress, that we should employ an "opt-out" rather than an "opt-in" card, so that all Americans will be presumed to be potential organ donors unless they object. Such a bill has never been passed, and many agree with Ramos, who calls the idea "unconstitutional."

Still, an increase in the number of donors is the only permanent -- and unbiased -- solution to this problem. We can shift the parameters, change the allocation criteria and allow more people on the waiting list, but there still won't be enough donor organs for everyone who needs them. If enough people make the commitment to becoming possible organ donors, the medical community will have no more excuses for turning its back on anyone, regardless of age, lifestyle or disability. And I'll never have to imagine the look on my brother's face when a doctor tells him that his life doesn't matter enough to save.


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About the writer
Jenna Glatzer is a New York freelance writer and editor of Absolute Write.

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