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Wednesday October 4, 2000

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Test-tube baby made to save sibling

By The Associated Press

MINNEAPOLIS - In the first known case of its kind, a Colorado couple created a test-tube baby who was genetically screened and selected in the hope he could save the life of his 6-year-old sister.

The sister, Molly Nash, has a rare genetic disease, Fanconi anemia, that prevents her body from making bone marrow. But last week, doctors gave her an infusion of umbilical-cord blood from her newborn little brother, Adam, to try to correct the disease.

Doctors should know in a couple of weeks whether the infusion is helping Molly develop healthy marrow cells.

Screening laboratory-created embryos for genetic diseases before implanting them in a woman is not new. But this is the first known instance in which parents screened and selected an embryo in order to find a suitable tissue donor for an ailing sibling.

"People have babies for lots of reasons: to save a failing marriage, to work the family farm," said Dr. Charles Strom, director of medical genetics at the Reproductive Genetics Institute in Chicago, where Adam was conceived. "I have absolutely no ethical problems with this whatsoever."

Molly was just beginning to show signs of leukemia, which is frequently associated with the disease, when she had the transplant, said Dr. John Wagner, her physician at the University of Minnesota. The infusion procedure between siblings has a 90 percent success rate.

"Molly's doing very well," Wagner said yesterday, although she had a slight cold. She was playing on a computer, he said.

As part of her disease, Molly was born without thumbs, but surgeons built some from a finger on each hand. She also had no hip sockets but can now walk thanks to the use of heavy braces.

Her parents, Jack and Lisa Nash of Englewood, Colo., wanted more children but were afraid to conceive because both carry a faulty version of the Fanconi gene, meaning each child would have a 25 percent chance of developing the disease.

The Nashes used a process called pre-implantation genetic diagnosis, or PGD: Embryos were created from Ms. Nash's eggs and her husband's sperm. Then fertilized eggs were analyzed, and when one was found to be disease-free and a tissue match, it was implanted. The couple had to try the procedure several times before she became pregnant.

Ms. Nash, who works as a neonatal nurse, said she and her husband could not knowingly bring another child into the world with the disease.

"We wanted a healthy child," she told the Star Tribune newspaper last month. "And it doesn't hurt him to save her life."

Adam was born Aug. 29. On Sept. 26, umbilical cord blood cells from Adam were given to Molly at the University of Minnesota.

If the transplant doesn't take, the next step could be to repeat the process with Adam's bone marrow.

Among the first couples to acknowledge publicly that they conceived a child as a transplant donor were Abe and Mary Ayala of Walnut, Calif. But they couldn't select an embryo a decade ago and had only a 1-in-4 chance that their daughter would be a suitable donor of bone marrow to fight her teen-age sister's leukemia. The baby, born in 1990, turned out to be a suitable donor, and her big sister recovered from the disease.

Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, said he doesn't see anything morally wrong in the Nash case, but it raises interesting questions.

"The first issue is, is it right to design anybody as a tissue source?" he said. "And sometimes it can be. In this case, there's no harm or danger to a person."

But the practice can become a "slippery slope," Caplan said. "What about a parent who says, 'Hey, I'd like to do that for my child who needs a kidney, or a piece of lung?'"

The procedure also raises the question of whether children will be "designed" for specific traits.

"To what extent are doctors and parents going to be free to design whatever they want in their kids?'" Caplan asked. "That's not going to happen tomorrow, but this is a baby step down that road."

When Molly is healthy, the Nashes plan to have more children through test tube fertilization, Strom said.