Wednesday, Jul 9, 2008
Pediatrician and ethicist Joel Frader says that just because a family has had a child to provide a bone-marrow transplant for an ailing daughter, it doesn't mean custom-ordered kids are right around the corner.
Oct 5, 2000 | Anyone with a heart can understand Lisa and Jack Nash's desperate desire to do something -- anything -- that could save their daughter's life. Six-year-old Molly suffers from Fanconi anemia, a deadly, genetic immune-system disorder, and a bone-marrow transplant from a matching donor is her only chance for survival. Doctors at the Reproductive Genetics Institute, a reproductive technology clinic in Chicago, told the Denver couple that the most effective method for finding a match was to have another baby, whose umbilical cord could then be harvested for the vital stem cells that Molly needed. So that's what the Nashes decided to do.
It's how they did it that has raised eyebrows. When Adam was born Aug. 29, doctors at the institute knew two things beyond a doubt: that he didn't carry the Fanconi anemia gene and that he was a perfect genetic match with his sister. They knew because Adam -- or rather, the embryo that became Adam -- was selected as the most compatible potential donor from among several eggs fertilized in vitro specifically for this unusual embryo "competition." Doctors at the University of Minnesota performed the bone-marrow cell transplant on Molly last month. The outcome remains uncertain, but the procedure has a good chance of providing her with a functioning immune system.
This is not the first time parents have had a baby under such circumstances. A decade ago, Mary Ayala of Walnut, Calif., bore a second child in hopes of saving the life of her teenage daughter, Anissa, who suffered from chronic myelogenous leukemia. The case drew widespread media attention and sparked a heated debate about the ethics of the Ayalas' decision. Today, however, both Anissa and her younger sister, Marissa, appear to be healthy and happy, and they say they share an unusual bond. "If it wasn't for her, I wouldn't be here," Anissa said in a recent interview with the Daily News of Los Angeles. "And if it wasn't for me, she wouldn't be here, either."
Since then, dozens of other families have conceived babies as potential donors for older siblings. But those decisions seem tame when compared with the Nash case, which is believed to be the first in which several embryos have been harvested solely in an effort to choose the best match.
Is the successful search for a satisfactory embryo simply a glorious medical miracle or does it move us dangerously close to a morally questionable realm of genetically designed children? Dr. Joel Frader, a pediatrician at Children's Memorial Hospital in Chicago and professor of pediatrics and medical ethics at Northwestern Medical School, spoke with Salon about this latest step toward customized kids.
What are your initial impressions about the Nash case?
It's interesting because if you look at this particular case it's hard to identify anything that you could clearly describe as a wrong or harmful to anyone. Some people could claim that the embryos not used were harmed, but we're only talking about groups of eight cells. It's clear that Baby Adam hasn't been harmed. I think one has to assume -- and I see no reason to believe otherwise -- that Baby Adam is going to be loved and cherished in his family, maybe even more, especially if the transfusion works. Decisions to have babies are usually fairly complicated decisions. Among the legitimate reasons to have babies, to help others is not a bad decision.
Is it common for families to bear a second child to save the elder sibling?
We don't have a lot of good data about it. It certainly isn't precedent-setting here, as the Ayala case can attest. In fact, there are several companies that are now responsible for harvesting and storing cord blood from normal babies. What happens in these cases is that the obstetrician collects the blood and umbilical cord and then it's stored. The parents then pay an annual storage fee, and can use it when needed. This may be a resource for others needing a stem cell transplant.
What are the chances Molly Nash's life will be saved by this procedure?
If you take 100 similar cases, if the siblings are genetically matched, in 80 or 85 out of those 100 cases the bone marrow will establish itself successfully. Now, if a child is born without genetic testing and preselection, there is a 1-in-5 chance that the two siblings will have the same genetic markers. If the markers aren't the same, the chances of a successful transfusion are about 30 in 100 cases. But we don't have much research, so it's hard to say exactly what Molly's chances are -- it will either work for her or it won't.
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