MPR: A Question of Life

A Question of Life
By Tom Scheck
October 18, 2000

Dr. John Wagner, a University of Minnesota cord blood specialist, holds a sleeping Adam Nash. His sister, Molly Nash, was born with Fanconi anemia, an often-fatal genetic disease. She received a transplant from Adam's umbilical cord blood on September 26, 2000. Twenty-one days later a bone marrow test reveals that the transplant is working and Molly's blood and bone marrow are carrying Adam's cells. See larger image.
(U of M Photo/Mark Engebretson)

Doctors at the University of Minnesota say a unique bone marrow transplant, conducted three weeks ago, is a success. The case involves a Colorado couple, whose daughter suffered from a rare - and often fatal - genetic disease. The parents employed a unique genetic embryo test to produce a child that would be a bone marrow match to their daughter. Scientists are applauding the research, but bioethicists and abortion opponents worry some may take the measures too far.

THE NASH FAMILY says it wasn't a decision based on science or genetics; it was a question of life. They knew their daughter, Molly, wouldn't live long without a bone marrow transplant. They also wanted more children who were free of the genetic disease, Fanconi anemia, that had plagued their daughter for six years. The couple decided to develop 12 embryos through invitro fertilization . Two embryos degenerated, one had the genetic disease and nine were disease free.

Many parents, who have one child with a genetic disease, test to see if the baby is disease free. But the Nash's went a step further. Knowing their daughter needed a bone marrow transplant, the couple also wanted the one-and-only embryo that would a be bone marrow match to their daughter. That's never been done before.

"We had this sick child, and anybody who's a parent knows that you would do anything to save their child," said Lisa Nash.

On August 29th, the Nash's had a son, who was disease free and a perfect bone marrow match. After Adam's birth, doctors in Colorado kept the umbilical cord and shipped it to Minneapolis. In September, researchers started chemotherapy on his older sister, Molly, to wipe out the diseased bone marrow in her body. Once chemo was finished, they scraped off cells from the umbilical cord and infused it into Molly's body.

"He was able to keep his big sister here. His cord blood, which is something that is usually discarded, saved his sister's life and that's something that most five-year-olds won't be able to say," Nash said.

Dr. John Wagner was the U of M doctor who performed the bone marrow transplant. He says the process of genetic testing on embryos, also known as "pre-implantation diagnosis," could have a profound impact on science. Future screening could give hope for therapies for incurable genetic diseases.

"It will be dictated by whatever the market may bear, that whatever genetic tests become available as the human genome project yields its results, will be applied directly when people can show up at a fertility clinic and say, 'I want to test for these genetic traits,' and a physician will say, 'Sure, if you have the money, we'll be able to do it."

- Dr. Jeffrey Kahn

"What we would like to accomplish is to do something in public policy, in terms of embryo research," said Wagner. "This is now something that's been beneficial to the Nash family, but it took many years; it took us probably five years for all this to occur in this one event."

Wagner says part of the problem involves public funding. The federal government has a long-standing ban of public funding for embryo research. Often research can only be done in the private sector, even though many of science's best and brightest need public funding to survive. And things done in the private sector, typically are dictated by the market place.

That worries bioethicists, like Dr. Jeffrey Kahn of the University of Minnesota. Dr. Kahn doesn't have a problem with the science involving the Nash family, principally because no one's life was threatened in any manner. But he says future genetic testing could also lead to parents asking for a child with blond hair and blue eyes. Kahn says it may only take money for that to happen.

"It will be dictated by whatever the market may bear, that whatever genetic tests become available as the human genome project yields its results, will be applied directly when people can show up at a fertility clinic and say, 'I want to test for these genetic traits,' and a physician will say, 'Sure, if you have the money, we'll be able to do it,'" said Kahn.

If you think Kahn's hypothesis is five to 10 years away, you only need to listen to Dr. Yuri Verlinsky from the Genetic Reproductive Institute in Chicago. His office genetically tested the Nash's embryos.

"We're doing about 30 to 35 patients a month for pre-implantion genetic reason," he says

Verlinsky says dozens of parents who don't want their children to develop a genetic disease are calling his office. He defends his practice and insists that his work is solely engineered to diagnose genetic defects in embryos not for cosmetic reasons.

"It's a misconception in the way to say this is design baby. We are not designing. Nature designs a baby. We help to get diagnosis and prevention."

Kahn says the federal government needs to address the issue of genetic testing and embryo research before science jumps too far ahead of policy. That could create a dicey climate in Congress, considering the volatile issue of abortion in this country. Many opponents of legalized abortion consider life to begin at the embryo stage.

Kahn is also worried about one other concept of pre-implantation diagnosis. When invitro fertilization occurs, scientists create 10 to 15 embryos. He wonders if there should be a policy regarding the storage of those "extra" embryos.

The Nash family says they have plan for at least one of their eight remaining embryos. They plan on having another baby in a year.

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