Embryo sorting makes
it possible to screen for gender and diseases. But the
embryos no one wants raise profound ethical questions.
AARON ZITNER; The Los Angeles Times; Jul 23, 2002; pg.
A.1
She had the name picked out since high school: Logann
Rae, taken from a soap opera. She had two dolls waiting
in a closet, both saved since childhood. Tanya had always
dreamed of having a daughter, and of the intimate bond
that would grow as they picked out dresses together,
styled their hair and painted their fingernails. But
Tanya's first child was a son. Then came another. When
an ultrasound showed that her third child was also a
boy, she struggled to hide her tears from the nurse.
And that is why this year she drove 400 miles to a
doctor's office in Westwood. Using methods common in
fertility clinics, doctors mixed Tanya's eggs with her
husband's sperm to create five embryos in a laboratory
dish. Then, using a new technique, they examined the
embryos to determine which had the DNA to become boys,
and which were programmed to be girls.
The three male embryos were frozen, their fate to be
decided later. The two female embryos were transferred
to Tanya's womb in an attempt to create the daughter
she always wanted.
The embryo-sorting technique-called PGD, for pre-implantation
genetic diagnosis-is quickly becoming the most controversial
development in high-tech reproduction. Doctors are able
to screen embryos not only for gender, but for whether
they carry the genes involved in cystic fibrosis, sickle
cell anemia and more than 100 other inherited diseases.
They can even tell whether an embryo would grow into
a good cell donor to help a sick person. The information
is helping parents choose which embryos they want-and
which to reject as unhealthy, or merely undesirable.
The cost is about $10,000, including the price of in
vitro fertilization, the procedure that creates "test-tube
babies" and which is a required part of embryo
screening.
But as the number of doctors offering the service leaps
upward, embryo screening is raising some profound questions:
Is it proper to discard an embryo based on its genes
or gender? Which lives are not worth living? Who decides?
"It's scary to have this power," said Tracy
Otte of Fountain Valley, who is trying to have a child
and avoid the muscular dystrophy that killed two brothers
in their early 20s. "If this technology was there,
would my brothers ever have been born? It becomes: Did
their lives have value? Absolutely, they had value.
But it was also tragic to see how young they died."
Some fertility specialists say the questions will only
become thornier, as scientists are bound to create tests
not only for disease but for various traits. "There
will come a day when we can determine height or weight
or skin tone characteristics, and the question is: What
do we do with that information?" said Dr.Jeffrey
Steinberg of the Fertility Institutes in Tarzana, which
has offered embryo screening for about a year. Society
at large "has to give us feedback, because this
is as new to us as it is to the rest of the world."
We've arrived at the point where we need a national
debate-no doubt about that," said David Hill, scientific
director at ART Reproductive Center of Beverly Hills,
which offers embryo screening services.
It is far from clear if parents will ever be able to
test for intelligence or athletic ability, which are
presumed to involve many genes and environmental factors.
Still, embryo screening is one of several developments
that could give parents significant control of their
children's genetic makeup.
Armed with data from the Human Genome Project, researchers
are probing the genetic foundations of obesity, mood
and disease. Testing devices called "gene chips"
are allowing scientists to track the activity not of
one gene, but of thousands at the same time. Cloning
and genetic engineering have enabled biologists to augment
the genetic makeup of animals, adding genes so that
the animals grow faster, bigger or more resistant to
disease.
But even before scientists gain additional powers over
human reproduction, there is worldwide debate over how
to handle the information embryo screening can reveal.
Debate Began in Late '80s
The debate has been building since the late 1980s, when
doctors at London's Hammersmith Hospital learned how
to tease a cell from a 3-day-old embryo and study its
chromosomes for gender. By weeding out male embryos
from the females, the doctors aimed to help parents
avoid such gender-linked diseases as hemophilia and
Duchenne muscular dystrophy, which are inherited overwhelmingly
by boys.
Later techniques allowed doctors to screen for the genes
that cause a variety of diseases. The screening, however,
has become widely available only in the last two years,
as more companies have begun handling the sophisticated
laboratory work for fertility doctors.
While no one keeps complete numbers, specialists say
about 50 U.S. clinics now offer the service to patients.
Nearly 2,000 embryo-screened babies have been born worldwide
since 1992.
Embryo screening has caught the attention of Joy Pablo,
34, a Los Angeles nurse who has battled breast cancer
since 1998. She worries that her 5-year-old daughter
will one day face the disease. She hopes her next child
can escape the same fear. "If they could guarantee
me a boy, I would have peace of mind," said Pablo,
"because the chances of breast cancer are so much
smaller than with a girl."
For Otte, 37, whose brothers died from muscular dystrophy,
the idea of rejecting a potential child because of the
disease is unsettling.
Her brothers had friends and went to college-one went
to his high school prom. "They had this disease,
but they weren't this disease," she said. Nonetheless,
she is trying to have a daughter through embryo screening
because muscular dystrophy rarely strikes girls.
"I know the road map of this disease, and it's
too tough to repeat that," said Otte, a third-grade
teacher. "At age 8 or 9 you start thinking about
a wheelchair. A cold can kill because there's no strength
to cough up mucus."
When having children, people such as Pablo and Otte
often roll the genetic dice and hope for the best. Or
they become pregnant and use a prenatal test, such as
amniocentesis, followed by an abortion if the test turns
up a problem.
With embryo sorting, "they can start their pregnancy
on Day One with a commitment to continuing it,"
said Dr. Mark Hughes of Wayne State University in Detroit,
who helped develop embryo diagnosis with the Hammersmith
doctors. "How can it be more ethically troublesome
to test before a pregnancy than later, when the fetus
has a heartbeat and is moving?"
Many Ethical Concerns
And yet, something about embryo screening makes many
people nervous, even people who do not see the embryo
as equivalent to a child.
Where amniocentesis usually provides information about
a single fetus, embryo screening allows parents to judge
and reject many potential children at once. And because
it bypasses the pain of abortion, some fear it will
be used too freely, coarsening attitudes toward the
embryo.
In Germany, the federal government has barred embryo
screening for any purpose. In England, it can be used
to select a child's gender only when there is a medical
need.
But in the United States, fertility techniques are
regulated more lightly, and there are no restrictions
on how embryo screening may be used. That leaves policy
to be set by people such as Dr. Jaroslav Marik of the
Tyler Medical Clinic, the doctor Tanya visited in her
attempt to conceive a daughter.
A regal man of 69, Marik has worked at the Tyler clinic,
in the shadow of the UCLA campus, since 1971. He was
one of the first doctors in a Western state to offer
in vitro fertilization. An enthusiastic defender of
patient choice, Marik believes embryo screening has
the potential to nearly eliminate diseases such as cystic
fibrosis.
But he also does not shy from offering it to patients
who have no medical need to select a child's gender.
"What is medical need?" he asked. "Isn't
the right to happiness and health a part of that?"
"Is there a medical reason for Dolly Parton to
have boobs like that?" he asked. "Is there
a medical reason to have liposuction? Is that a misuse
of medical technology?"
Marik, who works with embryologist Jerry L. Hall, said
about 70 of his patients have screened embryos since
2001, including 15 who sought a boy or girl for non-medical
purposes.
He believes he does the screening with proper respect
for the embryo. Patients work hard to make embryos and
want some good to come from them, he said. They usually
ask that rejected embryos be donated to research or,
when they are healthy, to infertile couples.
"I hardly remember anyone who instructed us to
destroy the embryo," he said.
Flaws, Embryo Rejection
But much of Marik's reasoning raises concerns among
critics of embryo screening-a constellation that includes
antiabortion groups, feminists, advocates for the disabled
and people within the fertility profession.
Rejecting a boy or girl when there is no medical need
draws the most objections.
"Morally reprehensible," said Dr. Robert E.
Anderson of the Southern California Center for Reproductive
Medicine in Newport Beach. "Most Americans, no
matter where they come down on the question of where
life begins, would find something morally objectionable
about creating embryos and then discarding some simply
because of their sex."
"It is inherently sexist. It values one sex in
favor of another," said Tania Simoncelli of the
Center for Genetics and Society, an Oakland public policy
group.
Hughes, the Wayne State doctor, said: "I went
into this to help people with disease. Last time I checked,
your gender is not a disease."
Some also argue that allowing endorses
lopsided gender preferences in other countries.
In some parts of India, where boys are heavily favored
for economic and other reasons, there are only 86 women
for every 100 men. Parents commonly use sonograms and
abortion to avoid having girls, though the practice
is illegal.
Still, some Indian fertility doctors bridle at the notion
of being bound by Western views. "I do not understand
why some Indians are ashamed that most Indians want
to have boys," said Dr. Aniruddha
Malpani, who has produced 22 children-all boys-from
screened embryos at his Bombay clinic. "The preference
for sons is based on traditions which are centuries
old, and these preferences are not going to change quickly."
Using embryo screening to detect disease has also drawn
protest.
Embryo tests can detect the genes behind cystic fibrosis,
for example, but not whether the illness will be so
mild that symptoms are negligible, as sometimes happens.
Some critics say it is immoral to reject a potential
life on the basis of a disease that may turn out to
be mild.
Some people argue against rejecting even embryos destined
to have severe disease. "Most people with disabilities
rate their quality of life as much higher than other
people think," said Deborah Kaplan, executive director
of the World Institute on Disability in Oakland. "People
make the decision [to reject embryos] based on a prejudice
that having a disability means having a low quality
of life."
There is a subjective component to deciding whether
any disease or flaw is severe enough to make life not
worth living. When Dorothy Wertz of the University of
Massachusetts Medical School surveyed U.S. genetics
professionals in 1995, she found that about 30% would
abort a pregnancy if the child was destined to have
severe obesity-something she considers to be more a
cosmetic condition than a disease.
The biggest use of embryo screening could have nothing
to do with disease in the traditional sense. Instead,
screening may become a routine way to boost the success
of in vitro fertilization.
Embryos that look fine under the microscope often self-destruct
in the womb because of extra or missing chromosomes.
Some doctors are now screening for these faulty chromosomes
before choosing which embryos to transfer to patients.
"The embryologists who begin to work with this,
their jaws just drop as they look back and say, 'Hey,
how many of these embryos that looked perfect but were
doomed to failure have I loaded into a catheter and
transferred to a woman?' " said Dr. Beth Ary of
the Reproductive Specialty Center in Newport Beach.
But this use of embryo screening is controversial as
well. Some doctors note that clinics test no more than
eight of the 23 pairs of chromosomes, and problems could
be hiding in the others. They also worry that embryos
are damaged in the process of pulling off a cell.
But Ary and her embryologist husband, Jim, said the
birth rates at their clinic rose after they began offering
embryo screening to patients in March 2001. And a Spanish
study found screening raised pregnancy rates among women
who had repeatedly lost pregnancies for unexplained
reasons.
Hoping for a Little Girl
For Tanya, the visit to Marik's office was a final effort
for a daughter. After three boys, her husband was willing
to have only one more child.
"They say the odds are 50-50 of having a girl,"
she said earlier this year. "But it isn't for me,
anyway."
She was dressed in a bathrobe, lying on a gurney in
a Tyler clinic examination room. Two female embryos
had just been placed inside her. She had asked Marik
to give researchers the three male embryos she created,
or to donate them to an infertile couple, at his discretion.
Tanya said she is comfortable using the technology but
fears some relatives, who are devout Roman Catholics,
would object if they knew. She asked that her last name
and hometown not be printed.
She talked about her love for her sons, but also about
a longing to re-create the intimacy that she enjoys
with her own mother. "It just seems that when boys
get older they close up a little more and get married,
and the wife takes on that closeness," she said.
While her husband bonds with their boys through fishing
and golf, Tanya dreams of barrettes and nail polish.
"I do my boys' hair up," she said. "I
put in lots of gel and spike it up real fancy. I painted
their toes, but my husband said, 'I don't think we're
going to start that.'
"He said: 'You need a girl.' "
Two weeks after her visit came the news she had wanted
for so long: She was pregnant. "There was so much
desire, and now it's being fulfilled," she said.
Her daughter is due in September.
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