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But at least some restrictions on using children as donors seem to be justified. Since infants and youngsters obviously cannot rationally weigh the risks to themselves against the benefits to others, parents are legally entrusted with such decisions. But the parents can hardly be objective in balancing one child's needs against another's. The operation that Marissa may undergo, perhaps when she is six months old, is far simpler than organ transplants. After anesthetizing the infant, doctors will insert a needle into her hipbone and take out a small amount of marrow. The pain will be slight, the risks minimal, and the marrow will regenerate.
The ethical dilemmas of creating a child donor could have been avoided if a suitable non-sibling donor had been available. Experts urge that more money and public-education efforts be devoted to expanding the national registry of potential bone-marrow donors.
Some ethicists believe parents like the Ayalas have a conflict of interest and that an outside legal guardian should serve as advocate for an infant. But others argue that such an intrusion is usually unnecessary. Families are guided by different principles than individuals, and a family's survival is recognized as a legitimate goal. "We expect family members to care about each other and to sacrifice themselves to some extent," notes Mary Coombs, a professor at the University of Miami law school.
By all appearances the Ayalas are not an exploitative family. To them the ethical questions that swirl around them are airy abstractions, not the terrifying reality they daily confront. A frightened Anissa has lately taken to dragging her mattress into her parents' bedroom each night. For her, there is no debate about how her family views soon-to-arrive Marissa. "She's my baby sister," Anissa declares. "And we're going to love her for who she is, not for what she can give me." Who is to say which sister is the luckier?
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