Ethicists ponder potential uses of donor child
The moral and ethical issues surrounding the selection of a donor sibling don't end with the baby's birth.
That donor sibling assumes a unique role in the life of the sick child and the entire family. After all, the donor child began as an embryo specifically chosen to help a sibling.
"That's an inevitable fact about the child's creation that the child is going to know," said Adrienne Asch, who teaches bioethics at Yeshiva University in New York City.
A perfect match for life, this child could be called upon should the sick sibling have additional medical needs. Parents, who would normally make a medical decision in the best interests of the baby, now are advocating for two children whose interests may diverge.
Advocating for the donor child
While some ethicists say they are okay with the umbilical cord blood and even actual bone marrow being used to provide a sick sibling with a transplant, they fear that may not be where the demands end for the donor sibling.
They ask: what if the parents need the donor child again, only this time it's for, say, a kidney for the sibling?
Some ethicists also worry about the mental health of the donor child down the road, once he or she learns the history of the conception.
"I'm concerned with the real, live children," said George Annas, head of the Department of Health Law, Bioethics and Human Rights at Boston University. "That's what you have to be concerned with -- the embryos that go on to become children.
"The first issue is whether you're having a baby just to be a donor. All parents deny that. They've learned the right answer to that question."
Beyond that, there's the issue of how the donor child is used, Annas said. For example, if the cord blood from the donor child isn't enough to save the sibling, doctors then go to that child for bone marrow, extracting it from the back of the child's hip in an operating room. This can be a painful procedure and has its own risks to the donor, such as infection.
To Annas, going beyond the cord blood crosses the line.
If bone marrow is taken, "Then the question is, 'How often do you have to do this?'" he said. "Hopefully it's just once."
Jeffrey Kahn, director of the Center for Bioethics at the University of Minnesota, shares Annas' concerns.
"When you take a 1-year-old to the O.R., presumably under general anesthesia, and you stick a big old needle in his hip, you have to think about how much risk you are willing to take," Kahn said. "How far up the level of risk would you expose the healthy child for therapeutic treatment for the sick child?"
Looking out for their rights
Beyond the parents, there is nobody looking at the rights of the donor child.
"There is nobody equipped to say, 'Hold your horses. Wait a second. Let's look at what's going on with the donor child,'" said Kahn's colleague Susan Wolf, a professor of law, medicine and public policy at the University of Minnesota.
"This is a living, feeling human being with his or her own interests," Wolf said. "How many times would you have gone to the hospital for your brother or sister, been anesthetized, and submitted to a bone marrow harvest? The answer to that would vary depending on each child and each family. A kid many not really want to play that role.
"If you were dealing with a 10-year-old, you might see something very disturbing. You might see a 10-year-old freaking out. A baby isn't capable of mounting protest."
While a parent -- in theory, at least -- would do anything to save his or her child, a sibling might not.
In the United States medical decision making is largely the parents' call, in consultation with doctors, even in those cases when children are coincidentally genetic matches to their siblings.
Jodi Picoult, a best-selling author who grew up in Nesconset -- the same community in Smithtown the Trebings live in -- wrote a 2004 novel called "My Sister's Keeper." In it she created a fictional scenario in which a 13-year-old "savior" sister, created through in vitro fertilization and preimplantation genetic diagnosis, sued her family so she wouldn't have to continue propping up her older sister's health, this time with a kidney transplant. At the end of the novel it's revealed she acted in part at the request of her sick sister, who wanted to be allowed to die. Because the oldest donor child worldwide is only 7, such a scenario couldn't yet happen.
Stacy Trebing said she started the book but couldn't finish it, especially since the sick child was named Kate.
Family dynamics a concern
Some psychologists worry about the new child's mental health, even if the donor child isn't called upon again after the initial bone marrow transplant.
"The parents are going to have to communicate to the child that the child is valued for his or her own characteristics and life, in addition to being created to save his sibling," Asch said. "In the same way that children can resent one another for all kinds of things, or can be jealous of each other or feel that they are not as valued by a parent, you obviously have plenty of potential sibling problems here. There's no way out of that. That doesn't mean the parents shouldn't do this, but they better be aware of what they are doing."
What the child may later feel is a matter of speculation, said Elizabeth Grill, psychologist at The Center for Reproductive Medicine and Infertility at New York-Presbyterian/Weill Cornell Medical Center in Manhattan. She counsels couples undergoing PGD.
"There's no black-and-white answer, because it really depends on the family dynamics and the evaluation of each family," she said.
If the transplant succeeds, and the donor child is elevated to hero status, she said, this could lead to a special role in the family that could be easy or difficult to handle.
"On the one hand, the children could feel an incredible closeness to each other," Grill said. "On the other hand, there could be these conflicted feelings of 'I feel used,' or 'I don't have a choice.'"
Beyond the donor child, the recipient also could feel guilty or grateful.
"We see this with sister donations of eggs," Grill said. "The recipient feels like they can never possibly repay this. What can you possibly give to repay the gift of life?"
And what if the transplant from the donor child fails?
"If a child is born and the older sibling dies, what will that do to the donor child?" asked Thomas Murray, president of The Hastings Center in Garrison, N.Y., a research institute devoted to ethical issues in medicine and the life sciences. Will the child feel he failed in the role he was born to play?
"I think that would be a challenge to parent," Murray said. "I'm not a person who believes that life is neat and tidy and runs smoothly. I can imagine strong families surviving that challenge very well. I could imagine others not so well."
