Genetic Engineering
EN 73
Kleen
3rd September, 2008
Rhonda Rowland
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Genetic testing of embryos raises ethical issues
ATLANTA, Georgia (CNN) - Six-year old Molly Nash and 9month-old brother Adam are siblings1 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
Jack and Lisa Nash with their
healthy kids, and possibly to have a transplant for Molly. I
children Molly and Adam; the
was going to save Molly no matter how, and I wanted her to
Nashes had Adam in hopes of
helping Molly defeat a genetic
have siblings," said Lisa Nash, their mother.
disease
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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
cord3 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. "What’s new here is not the use of umbilical cord
blood in the treatment of a life-threatening disease, but it’s the way the transplant was engineered
and the way the baby was conceived," said Dr. John Wagner of the University Minnesota, expert
in cord blood transfers and Fanconi anemia. 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.
About 98 percent of people with the anemia have bone marrow4 failure by age 35, and half have
it by 7. The best treatment is a transfer of stem cells found in the umbilical cord of a sibling,
because the recipient's body is not likely to reject them, said Wagner. The survival rate for a
patient with Fanconi anemia is 31 percent after a transplant from someone who is not related, but
jumps to 85 percent with blood from a sibling, Wagner stated.
"What this technology did was take away the guesswork," he added. "It allowed them to have -and know that they were going to have -- a healthy child and one that would match."
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 genetic defect puts people at risk for a range
of cancers5. "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.
It is widely considered ethical to screen embryos for genetic diseases because it is best for the
child, explained Jeff Kahn, director of the University of Minnesota's Center for Bioethics. But
the case of the Nash family is different because the embryo that became Adam was also selected
for traits that would benefit someone else -- his sister.
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1 siblings – Geschwister, 2 (to) conceive – zeugen, 3 umbilical cord – Nabelschnur, 4 bone marrow – Knochenmark,
5 cancer – Krebs
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"That's what we had to do for us," said Lisa Nash, "and I
would hope that people who felt this was inappropriate6 would
feel it was inappropriate for them and not judge me unless
they've been where I've been."
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.
Jack and Lisa Nash at news
conference
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June 27, 2001, CNN Medical Unit http://archives.cnn.com/2001/HEALTH/06/27/embryotesting/indexhtml
October 3, 2000, CNN Medical Unit http://edition.cnn.com/2000/HEALTH/10/03/testube.brother/
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6 inappropriate – inakzeptabel, verwerflich, falsch