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.