The new test that reveals birth
abnormalities at a much
earlier stage...
Every new advance in
prenatal screening...
Diseases are being literally
stopped in their tracks...
...brings difficult questions.
"Red identifies the chromosome 21"
"What's normal or abnormal?
Where do you stop?"
Do you think that this could lead
to a world without
Down Syndrome kids?
Oh, this is eugenics—weeding out
specific communities that we deem
as fundamentally unfit.
100 years ago, eugenics was the
law—part of a plan to stop the
so-called genetically inferior
from having children.
Tens of thousands of people
were sterilized as a result of
these laws.
We need to really
understand how that happened and
we shouldn't let it happen again.
Jackson, where's your bowl?
In many ways, Rebecca and Patrick
Cokley live the American dream.
Jackson is seven.
Kaya is four,
and the last addition is Kendrick.
It's never boring.
We have a great life.
I had the pleasure of growing up
in a very strong community of
little people.
I was literally
born and raised into the
disability rights movement.
Rebecca is the second generation of
her family with achondroplasia,
the most common form of dwarfism,
and is an advocate for
people with disabilities.
We need fair pay; we need family
leave; our issues are fundamentally
women's issues.
I was in the White House for two
and a half years as
President Obama's Chief Diversity
Officer.
It was an
incredible experience.
In August of 2017, she published an
editorial about genetic engineering
and prenatal diagnosis.
So as the testing becomes more and
more available, an obvious fear is
that people will abort kids like
that cute girl riding the scooter
outside because of what they
don't know.
that my children may end up being
the last generation of people
like them.
I think we can look back
historically, and it's scary.
What is the bearing of the laws of
heredity upon human affairs?
Eugenics provides the answer.
The idea that society would try to
eliminate groups of people based on
real—or perceived—disability is
not far-fetched.
One of the terrible things about
eugenics was that it basically
declared certain people had
lives that were not worth living.
In the early 1900s, the American
eugenics movement arose as a
response to increased immigration
and rapid social change.
New York City was now a restless
and thriving metropolis.
People are moving from farms to
cities, and there's a lot of
poverty and crime.
So, a number of
scientists became convinced that
this was the result of hereditary
feeble-mindedness.
And you
could actually improve the human
race by controlling their heredity.
It was completely wrong,
but it fit with longstanding
prejudices that people had.
They would hand out awards at
state fairs to families that
represented the best in
American society
and encourage them to have kids.
On the flip side, they
started pushing for laws allowing
states to sterilize people
that they judged unfit.
Eugenics programs were set up
in more than 30 states.
They would draw these elaborate
family trees.
And they would note whether these 
people had a normal intelligence.
And then say, 'Ah-ha,
you see?
There are lots of people
in this family who are
feeble-minded.
Forced sterilization was even
approved by the Supreme Court
in the 1927 case Buck v. Bell,
dramatized in the film
"Against Her Will."
I believe that preventing Carrie
Buck from childbearing is our duty.
In the late 1920s, support for
eugenics began to wane,
as new research undermined its
basic ideas about heredity.
[Nazi crowd cheering]
Sieg Heil!
And then in World War II,
Nazis adopted American eugenics.
And they said, well, not only are
we going to sterilize people, we're
going to kill them too.
So, after World War II, eugenics
as a movement
completely collapsed.
Despite her fears, Rebecca Cokley
says reproductive choices must
always be personal, and that it's
important to remember eugenics laws
prevented people with disabilities
from making these kinds of
decisions for themselves.
As a woman who is very pro-choice
and believes that that's a
fundamental right, it is hard to
talk about the fact that people are
going to abort kids like me.
That's why having
conversations like this
is so important, to get out there
to show people that we have a life
worth living and a
life with dignity.
Genetic screening was not
always so complicated.
When it began in the
early 1970s, it was seen as a
nearly miraculous way to
prevent horrible suffering.
There you go.
It was really scary because we
knew that there was
something going on.
Shari and Jeff Ungerleider's first
child, Evan, had Tay-Sachs,
a fatal genetic disease.
Children like Evan
appear normal at birth
but soon deteriorate.
It's horrible.
These children go blind and deaf,
they can't move on their own.
They can't express what
they're feeling.
On a good day, he
would have two dozen seizures.
There was nothing that we could do
for Evan except keeping him happy,
out of pain, not suffering.
Happy birthday...
There's nothing worse than knowing
that your child is going to
die before their fifth birthday.
A family's chances of having a
Tay-Sachs child are greatest
if they are of Jewish heritage.
Tay-Sachs is caused by a mutation
in a single gene.
In 1971, a test
was developed to identify
Tay-Sachs carriers.
If both parents carried the gene,
there'd be a one-in-four chance
that the fetus would have
this disorder.
The Jewish population
said, 'Let's start
a screening program.'
A simple blood test provides a way
to prevent this tragedy.
A Tay-Sachs testing will be
held in your community soon.
At synagogues, at Jewish community
centers, they just set up tables,
drew blood... identified
the carriers.
After Evan, Shari and Jeff
Ungerleider terminated one
Tay-Sachs pregnancy and had three
healthy children.
Shari is now a
speaker and advocate for screening.
I believe knowledge is power.
I loved Evan more than anything.
I mean, he was my first child.
But if there was any way I could
have spared him, I would have.
Actually performed
genome sequencing...
Ron Wapner is a geneticist and
obstetrician who has been
practicing since the 1970s.
He watched Tay-Sachs 
become the model
for a whole new kind of
preventive medicine.
What was radical was that the
community decided to do something
about a genetic disease that was in
their population.
They almost wiped
out the disease, and nowadays
it's exceedingly rare to see a
child with Tay-Sachs disease.
But now, some 40 years later,
he says advances in technology...
What we're doing is sequencing
amniotic fluid samples.
...have made it easy to screen
potential carriers, fetuses,
and even embryos for hundreds
of genetic conditions.
Everyone agrees, if it's a severe
and profound disorder, we should
screen for it.
But the discussion
that we need to have is,
where is our technology taking us?
A new option,
a simple blood test.
The newest test, called cell-free
DNA, is so easy, it's routinely
advertised to pregnant women.
It's actually the most widely
adopted genetic test
that I've seen.
Genetics researcher Wendy Chung has
seen screening spare families
from horrible suffering.
31.3 kilos, okay
you can step out now.
But its rapid expansion
has her wondering.
I've got a lot of patients that
have many of the genetic disorders
that we could identify through
the cell-free DNA.
My heart works very hard.
Yes, it does.
It needs to, knowing that
I have Turner Syndrome.
Girls with Turner Syndrome, some
of them will have structural
differences in the way their
heart is formed.
And differences in the
way their ovaries work.
I mean sure there's been
ups and downs but that's normal.
You eat a lot of chips?
I'm sort of addicted to them.
Aaah.
They're perfectly healthy.
Who's to say
that that's a disease?
It's a difference, sure.
Is it something that you can still
be happy, well-adjusted, productive
member of our community?
Of course.
High-five.
When it began, screening was only
for those with known risk.
Now, Dr. Chung worries about
offering more tests to more people...
without first educating them about
what the results really mean
and what various conditions entail.
The concern is they buy into that
idea that they need to do as much
as they can to ensure
a healthy child.
When there's a genetic
problem with their fetus,
the knee-jerk reaction is,
'it started with Tay-Sachs so it
must be the same.'
And so, automatically they
start thinking about ending that
pregnancy, because if it weren't
bad, why would you have tested me
for this in the first place?
As we consider our options, as
individuals and as a society,
there is also the
shadow of history.
No matter what we do,
the one line
we should never cross is this
always has to be voluntary.
It should never be a
mandate that you have to
have genetic screening or testing.
We have to be incredibly on our
guard that we're not simply looking
at people and saying, 'I've decided
your life is not worth living.'
This has happened before, and, as
our science gets more powerful,
we shouldn't let it happen again.
