Where the Debate Over “Designer Babies” Began | Retro Report

Where the Debate Over “Designer Babies” Began | Retro Report

August 2, 2019 14 By Bernardo Ryan


A revolutionary technology that
can edit genetic mistakes. News that researchers modified the
DNA of a human embryo has created shockwaves, reigniting
a familiar refrain. Designer babies Designer babies Designing babies is not allowed
in America now, but it’s coming. It’s not the first time a
scientific advance involving embryos has ignited alarm. A British medical team
said today it hopes to create the world’s first test-tube
baby by the end of this year. In the 1970s, the idea of in vitro
fertilization was still a dream, but fears of where it might
lead were already taking hold. This is one step toward
further modes of manufacturing our children. People were just generally scared. They didn’t know what
was going to happen. I think it was tied up with the old
novel, Brave New World, in which the babies there were gestated
in what he called bottles. Mark Bernard G.,
inspected and approved. To create a baby in the laboratory
in a petri dish was considered not just abnormal,
it was considered immoral. Several other doctors say
they are against the idea. They claim it opens the way for
mass production of babies and as they put it a nightmare
of biological engineering. Concerns ranged from: there is a
slippery slope here, once we start making life outside the womb, once
we start making life in dishes, won’t we wind up saying that’s the
best way to do it for everybody? That we are going to wind up
eliminating natural reproduction. People said all sorts of
nasty things about it. They thought they were
creating designer babies. They would create monsters. There was fear that someday the
techniques could be used to develop something other than
a normal human being. One MP warned of the dangers of
scientific breeding becoming a reality, of a revival of Adolf
Hitler’s concept of a master race. The two scientists at the forefront
of the research, Patrick Steptoe and Robert Edwards, conducted their
work in a secluded laboratory far away from the media spotlight. They were doing things like
disguising themselves and making sure that their cars were parked in
a different location when they went to visit or do any of the work. It was really cloak and dagger. After more than a decade of
research, their controversial experiment became one of the
biggest medical stories of the century. The world’s first test-tube baby was born here in
Britain last night. A pink, healthy baby girl
who began life in a test tube. At birth it came out crying its
head off and in very good state, breathing very well. Louise came out, she wasn’t a
Frankenbaby, she was healthy, she looked normal. The fact that the first human
I.V.F. that went to term, resulted in a healthy baby, dramatically
changed perspectives on I.V.F. We forget now because I.V.F. is
commonplace, but really Louise Brown heralded hope for millions of people
throughout the world. That hope, and the media’s
fascination, generated hundreds of headlines around the globe. When I look back on the cuttings –
newspaper cuttings, and films, we couldn’t come back home
to Bristol for 11 to 12 days, and when we did there were
100 journalists-plus outside our little house from
all over the world. It was just madness. The birth of Louise Brown
was a Nobel Prize-winning event. Not just because of the technology
but because of the beauty of what it did for Louise Brown’s family
and for thousands and thousands, now millions of couples around
the world who have been able to have children. Dr. Mark Hughes is part of the team
of scientists that took I.V.F. to the next level. In the early 1990s, they pioneered
a technique that allows doctors to screen embryos for
potentially lethal diseases. The idea is to make a diagnosis
before a pregnancy ever begins so that couples who are at high
genetic risk can avoid that disease before they ever get pregnant. It’s called pre-implantation
genetic diagnosis, or P.G.D., a procedure in which couples go
through I.V.F., even if they don’t have fertility problems. Doctors then test the DNA of the
embryos and only implant healthy ones. We can say embryo 2, 5 and 7 don’t
have this genetic condition and they’ll be safe to transfer. Not long after Eden was born, we
knew there was something that wasn’t exactly right. When Randy and Caroline Gold’s
second child, Eden, was 18 months old, she was diagnosed
with mucolipidosis Type IV, or ML-4, an incurable genetic disease
with a heartbreaking prognosis. Kids with mucolipidosis Type IV
will likely never walk; they’ll never talk. They’ll go blind by the
time they’re 12 years old. And they will have a very
limited lifespan. High five on that girlfriend! The Golds dreamed of
having a third child… but they knew that dream
carried big risks. Because Caroline and I carry the
same mutation for ML-4, we have a 25-percent risk
with every pregnancy that we can have a child
with that disease. The Golds turned to Mark Hughes,
and, using P.G.D., he was able to identify an embryo
without the ML-4 mutation. Today, Eden has a healthy
little sister, named Shai. It was an absolute miracle. P.G.D. has helped thousands of
families like the Golds, but it has also reignited a familiar debate. Is it leading to the creation
of designer babies? As the science advances, ethical
questions about when and where to draw the line when it
comes to picking and choosing only the healthiest embryos. Critics say it can become
a slippery slope. From the very first cases of
embryo testing for genetic disease the slippery slope of designer
babies was in everybody’s mind — Oh, we’ll be testing for anything. The use of embryo screening
procedures like P.G.D. has expanded. They can now test for hundreds of diseases and
chromosomal abnormalities. Yet much of the media attention has
focused on the doctors who push those boundaries. This is the room where
the magic begins. It’s called gender selection. For over a decade, Dr. Jeffrey Steinberg has been
a flash point in the debate constantly in the news
for marketing the use of P.G.D., not just for medical necessity,
but to let couples choose the sex of their child. Dr. Jeffrey Steinberg, Director of
Fertility Institutes, says up to 90-percent of his patients
come to him specifically because they want to decide
whether they have a boy or a girl. The technology was out there. It was being applied
only to preventing diseases. Well, I decided to open
the door and expand it and say, listen, this is something
that people are interested in, causes no harm, makes people happy. Let’s expand it. Sex selection for
non-medical reasons is illegal in many countries. But not in the United States,
where some aspects of the fertility industry are loosely regulated. Many of the procedures cost
upwards of $10,000. Yet Steinberg says he has
no shortage of patients and is currently marketing a new
cosmetic option for what he calls 21st-century parents-to-be. Twenty-five years ago I predicted
we would be choosing eye color. We’re able to do that now. It turns out, people
want blue eyes. Not only are we able to assist with
that, but we can offer them a choice of 30 shades of blue eyes. These claims are met with great
skepticism by many scientists and also raise ethical concerns. Jeffrey Steinberg claims that he
can give you a child with a particular eye color. I don’t know what he really means
by that, but I think that, again, is an example of how we have to be
very careful to draw lines that are clear and can be enforced. Marcy Darnovsky runs a watchdog
group that focuses on the social impact of reproductive
and genetic technologies. What counts as medical? What counts as enhancement? I mean, where do – how could
you draw a line? Today that question is more
relevant than ever. Medical breakthrough, or the first
steps down a dangerous road? In 2017, researchers at Oregon
Health and Science University announced a groundbreaking development. For the first time in the United
States, scientists have edited the genes of human embryos. Using a technology called Crispr,
they were able to correct a defective gene that causes a
potentially fatal heart disease, altering a trait that could be
passed on to future generations. There was never any intention
of creating a pregnancy, but like I.V.F. before it, the breakthrough was
received with both excitement and alarm. Critics worry Crispr could be
used to create designer babies. Last year, former Director of
National Intelligence James Clapper called genome editing a potential
weapon of mass destruction. And Congress has banned turning
gene edited embryos into babies. I think a lot of the times those
fears are largely overblown. Dr. Paula Amato is a co-author of
the research on editing human embryos. When you think about the traits
that people would like to enhance, things like intelligence or
athleticism, we actually don’t know the genes that are responsible
for those things. And it’s likely to be
more than one gene. So even if you wanted to do that,
at least at this point in time, it would be very difficult
if not impossible to do. But the ability to genetically
modify embryos could be a new frontier, one in which it is no
longer just about changing the genetic traits of an individual, but of all their
descendants as well. I think this is a slippery slope
that we’re on. That doesn’t mean that we have to
forgo everything along the way. It does mean that we have to make
sure we have brakes and we have to make sure we have stopping points. All new technologies need to
be carefully and properly assessed. I think you can’t have
the Wild West. On the other hand, I think you can
get yourself into a fear situation where you become paralyzed
and can’t do anything. When any medical advance is made,
any medical advance is made, there’s first of all one success. Somebody had to be first. And then there are others. There’s six million of us
babies been born through I.V.F., which is fantastic. I’m actually quite proud to
say that it started with me.