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.
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.
Flaws, Embryo Rejection
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 gender selection 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.
This site contains copyrighted material the use of which has not always
been specifically authorized by the copyright owner. We are making such
material available in our efforts to advance understanding of
biotechnology and public policy issues. We believe this constitutes a
'fair use' of any such copyrighted material as provided for in section
107 of the US Copyright Law. In accordance with Title 17 U.S.C. Section
107, the material on this site is distributed without profit to those
who have expressed a prior interest in receiving the included
information for research and educational purposes. For more information
go to: http://www.law.cornell.edu/uscode/17/107.shtml. If you wish to use
copyrighted material from this site for purposes of your own that go
beyond 'fair use', you must obtain permission from the copyright owner. |