Ethicists ponder potential uses of donor child

BY BETH WHITEHOUSE | beth.whitehouse@newsday.com

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."