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Genetic testing of embryos raises ethical issues
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.

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."

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.

http://www.cnn.com/2001/HEALTH/06/27/embryo.testing/index.html

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