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Genetic testing of embryos raises ethical issues

Six-year-old Molly Nash, right, received a stem cell transplant from her brother Adam last year
Six-year-old Molly Nash, right, received a stem cell transplant from her brother Adam last year  

From Rhonda Rowland
CNN Medical Unit

ATLANTA, Georgia (CNN) -- Six-year-old Molly Nash and 9-month-old brother Adam are siblings who share an unusual bond.

Molly was born with multiple birth defects due to Fanconi anemia, a deadly genetic disease that often leads to leukemia. Her best chance for survival was a perfectly matched stem cell transplant.

"Jack and I were determined to have more kids, to have more healthy kids, and possibly to have a transplant for Molly," said Lisa Nash, their mother.

So Adam was conceived in a petri dish, selected as an embryo because genetic testing determined he was free of Fanconi anemia, and his umbilical cord blood would provide a perfect match for his sister's transplant.

Genetic selection gives girl a brother and a second chance  

It was the first time a procedure called pre-implantation genetic diagnosis was used both to create a healthy life and save an existing life. Because the technology is expanding with the mapping of the human genome, ethical and moral questions are being raised.

An editorial in the current issue of the Journal of the American Medical Association says the technology "results in choice without abortion. However, it is essential to proceed with caution when the applications may exceed or progress from concerns regarding preventing inherited lethal diseases to designer genetics."

'God gave us this technology'

Molly Nash holding her brother Adam last year
Molly Nash holding her brother Adam last year  

For the Nashes, using the new technology was an easy choice.

"God gave us this technology, God gave us Adam and God gave Molly her second chance at life, and to us that was what was morally and ethically right," Lisa Nash said.

Nine months after the transplant, Molly Nash is doing well, although doctors say she isn't out of danger yet. Until a full year has passed, she cannot go to school and must protect herself from infections by wearing a face mask outside.

The same doctors at Chicago's Reproductive Genetics Institute who helped the Nashes conceive son Adam have since used pre-implantation genetic diagnosis to help another couple conceive a baby with no inherited predisposition to a type of cancer called Li-Fraumeni syndrome.

The genetic defect puts people at risk for a range of cancers.

"You have about a 50 percent chance to have cancer before you're 40 years old, and about 90 percent by the time you're 60 years old, so I think this kind of horror to live with is very good to avoid," said Yury Verlinsky, director of the Reproductive Genetics Institute.

Selecting embryos that are at risk for disease -- as opposed to those that signal a definite devastating condition -- raises more ethical questions.

"This particular embryo which is at risk for breast cancer may go on to be a fantastic artist, pianist, scientist -- may discover the cure for cancer," said Dr. Hilton Kort of Reproductive Biology Associates in Atlanta.

The Nashes started with 30 embryos, and only five had the right genetic makeup. In the fourth attempt at pregnancy, the last embryo resulted in Adam's birth.

The total cost was more than $40,000. But Molly Nash has a healthy brother, and will soon celebrate her seventh birthday.

• Babies by design
January 4, 2000

• Fanconi Anemia Research Fund Home Page
• Reproductive Genetics Institute
• Reproductive Biology Associates - Comprehensive Infertility Care - Atlanta, Georgia

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