Select a baby's health, not eye color

Clinics offering to create designer babies may turn people against a

procedure that can save lives.

By Allen Goldberg

February 17, 2009

Something stinks about reproductive medicine in Southern California, and it

doesn't involve eight dirty diapers.

Recently, the Los Angeles-based Fertility Institutes announced that it would

soon be offering patients at its clinics the chance to choose traits such as
"eye color, hair color and complexion." The clinics already offer gender
selection to patients undergoing in vitro fertilization.

The Fertility Institutes employs a technique known as "preimplantation

genetic diagnosis," which allows doctors to screen embryos soon after they
are created in a petri dish and implant only the ones that meet certain
criteria. The technique was invented to help high-risk families avoid or
manage potentially deadly genetic traits, and to help women who've had
multiple miscarriages conceive babies they can carry to term.

Now the Fertility Institutes is corrupting this lifesaving clinical procedure by

using it to help families create designer babies, and I worry that their
excesses will turn public sentiment against all preimplantation genetic
diagnosis. That would be wrong.

My son, Henry, was born with a rare and fatal genetic disease, Fanconi
anemia. Fanconi patients are born with faulty immune systems and a host of
health problems. They are at high risk for leukemia and other deadly
diseases and usually die before the age of 30. The only hope is a bone
marrow transplant that replaces the immune systems they are born with. The
transplants are most likely to succeed if the donor is a sibling who is a perfect
genetic match.

My wife, Laurie, and I had always planned to have more children, and in the
late 1990s we decided to try to employ preimplantation genetic diagnosis in
an attempt to conceive a baby free of the deadly disease who would be a
perfectly matched cord-blood donor for Henry. Cord blood is usually disposed
of after birth, and harvesting it causes no problems or discomfort for a baby.

We were among the first families attempting the technique, but after three
years of trying unsuccessfully, we ran out of time. Henry's health was
deteriorating, and he needed an immediate transplant, which he got from an
unrelated donor. Ultimately, his body rejected it. In December 2002, he died
at the age of 7.

In the decade since we first tried to conceive using embryo screening, the
technology has improved and has saved many lives. I get letters and e-mails
with regularity from other Fanconi anemia families who were able to conceive
babies who saved their siblings' lives.

But not all Fanconi families are lucky enough to live in the United States,
where preimplantation genetic diagnosis is legal. The regulation and
availability of the technique in the European Union is a patchwork, and some
countries ban the practice outright.

I understand that there are ethical issues surrounding the procedure. Not all
families are comfortable with creating embryos in the laboratory knowing
that some of them will be discarded. And no one would advocate creating a
child who is only wanted to save another's life. But the choice of whether to
employ screening is a deeply personal one and should be considered with
great care by families in consultation with their doctors and genetic
counselors.
What I now fear, though, is that clinics offering trait selection to satisfy the
whims of parents will turn people against a procedure that can save lives.

Henry was among the most optimistic, wise and courageous people I have
ever met. We felt a great responsibility to do everything in our power to save
his life. In the end, that wasn't possible. But our efforts contributed to
scientific knowledge, and for that we are grateful. Abusing that hard-won
knowledge to capriciously choose hair color, eye color and other cosmetic
traits in a baby is wrong and repugnant.

Allen Goldberg is a marketing executive who lives in Washington. His blog

about his son, Henry, can be found at

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