A World Without Down's Syndrome?

-Knock-knock.

-Who's there?

-Chicken.

-Chicken who?

Buck-buck!

THEY LAUGH

Buck-buck!

That's rubbish!

-Knock-knock.

-Who's there?

-85.

-85 who?

Doctor!

'This is Olly, my son.

'He likes chocolate ice cream, he likes Barcelona football club.

'He also has Down's syndrome.'

When Olly was diagnosed 11 years ago,

I never could have imagined that our family

was going to end up looking like this.

Or like this.

Or like this.

But although Olly's the reason I started making this film,

it's not just a film about him.

It's not just about Down's syndrome, either.

It's a film that asked the question,

"What kind of society do we want to live in?

"And who do we think should be allowed to live in it?"

And if that all sounds quite heavy, then don't worry.

There is also some interpretive dance.

And I should probably warn you at this early stage,

I've never actually made a documentary before, so...

No, it's going to be fine.

It's going to be absolutely... Hold on to your hats, people!

This programme contains some scenes which some viewers may find upsetting.

Happy birthday!

THEY LAUGH

Oh, Olly!

Happy birthday.

SHE LAUGHS

-This is funny.

-Wow!

-This is funny.

THEY LAUGH

Welcome, people of Great Britain, to my life.

As you can see, I have three very well-behaved perfect children.

Um, they respect me deeply.

They do everything that I say.

No, no, no, no, no, no. No, no, no.

No! No, on the page.

OK, that's not quite true. A lot of it's to do with this guy.

-Hey, Olly.

-Yes?

-Come here.

-Yeah.

-Say hello.

-Hello.

Nice to meet you.

SHE LAUGHS

Shake hands!

No, Olly. Olly!

'Yeah, I'm not going to lie to you.

'Living with Olly does present some challenges.'

But, you know, I go to work, I go to a sitcom,

and I'm surrounded by mayhem.

So I'm kind of used to it.

Hose time!

Hose time?

Oh, oh, no!

Oh, don't! No!

Oh, oh!

Amazingly, I'm not the only one who thinks this isn't a disaster.

A majority of people with a Down's syndrome family member

are really happy with their lot.

I was expecting tragedy, but I've got comedy and that, my friends,

is where our story begins!

THEY SHOUT AND LAUGH

Hey, guys!

OK, to be more precise, it's HERE where our story actually begins.

Every year, around half a million pregnant women come to

a place like this to see their baby for the first time.

There's a heart beating there.

The body.

See the hands.

'I've come to King's College Hospital in London,

'to meet some women who are having their 12-week scan.'

So how are you feeling now?

Excited. Yeah. Seems more real now.

'Today's the day when mothers find out

'when their babies are due and whether they're growing normally.'

Hi.

'It's also the day when doctors first test your baby for Down's syndrome.'

-How old are you now?

-I'm 40.

'You're given a probability that's calculated by measuring the baby and the hormone levels in your blood.

'It's a bit like gambling odds and getting bad odds is seen as devastating news.

The white line shows that as a woman gets older, your chances go up.

Because you're now 40, when you came in the room, the risk was there.

From the measurements that I have taken, your risk has gone down,

from one in 69 to one in 301.

-OK.

-This is so far.

The odds went down, didn't they?

Yeah, yeah. They did, yeah.

I'm a geriatric mum, as they call it, so I want to be sure.

Yeah.

-I want to have all bases covered.

-I will leave you.

-Thank you very much.

-Thank you very much.

-Very nice meeting you.

-Thank you.

-OK.

In the last ten years,

the number of people terminating for Down's syndrome has gone up by 40%.

Now, nine out of ten British women terminate when they receive

a positive diagnosis.

Of course, I have a biased opinion,

because I have a child with Down's syndrome who I love more than life,

but my big question at the beginning

of this is what's so very dreadful to the world about Down's syndrome?

So let's go and ask Professor Nicolaides about that.

-SHE KNOCKS

-Yep?

'Professor Nicolaides is a foetal medicine expert and has been

'developing more effective screening tests for the last 25 years.'

Would you mind telling us more about why Down's syndrome

has been focused on?

From my point of view, the essence is that there is a demand

and we believe that the main objective

is to provide women with information.

I have learned over the years that for some people,

having a baby with Downs is an intolerable event.

All I want to make this programme for is to say, "You know, it's really not a catastrophe."

Why is everybody behaving like it's a catastrophe?

Um, whether they have their own perceptions

of what the condition is or the system has not emphasised to them

the goodness that can come from having a baby with Downs,

I do not know, but it is a fact,

it is associated with mental disability

and, importantly, they live for very many years,

so if we think of it as a burden to the family or to the society,

it is a burden that is going to last for a long time.

'A burden that lasts for a long time.

'That's not exactly how I see Olly.

'But legally, you can terminate a Down's pregnancy right up to birth,

'as Down's syndrome is classed as a severe disability.

'And if you look at the leaflets the NHS hand out to mothers

'when they get the diagnosis, it does sound severe.'

I mean, I... You know - complications, heart problems,

gut problems, hearing problems,

vision problems, thyroid problems, dementia.

I think that just makes you frightened.

A medical description will only list all the possible things that could go wrong.

And it's not then compared with the list of all the possible things

that could go wrong with a typical person.

I mean, how would you describe yourself?

Are you chromosomally typical?

Are you neurotypical?

I'm a neurotypical person with 46 chromosomes

who had childhood asthma and who has a family history of glaucoma.

Does that describe me?

'To me, Down's syndrome is much more than a list of possible health problems,

'but that's cos I know Olly.

'But what actually happens inside his cells that makes him different?'

In every cell, there are meant to be 23 pairs of chromosomes.

But somebody who has Down's syndrome has an extra copy of chromosome 21.

Chromosomes contain information that makes us who we are.

So if you have an extra one, it means you develop differently.

There are some common features like being a bit smaller than average,

having a smaller mouth, so your tongue may stick out,

almond-shaped eyes and some level of learning disability.

But not everyone looks the same or is affected in the same way.

Just like all of us, there's an endless variety.

'Well, not endless.

'There are now only 40,000 people with Down's syndrome in the UK.'

But not everyone chooses to screen.

And I'm about to meet a mum who's consciously opted out of the system.

So, do I talk to you and say, "Here we are at the house!"

Or is that like Through The Keyhole?

That's a bit like Through The Keyhole.

THEY LAUGH

We're just going to off, like, au naturel.

Au naturel. OK.

Hi, there, Emma. Hiya, how are you? Nice to meet you.

Nice to meet you. Come on through.

So, I can't help noticing that you're pregnant.

SHE LAUGHS

How many weeks are you?

28 and a half weeks.

28 and a half weeks.

The GP told me they want to screen me nice and early to make sure this baby doesn't also have it.

How are you?

'It's different for everybody.

'For me, I don't feel like the screening would really tell me that much.'

I have experience of having a child with Down's syndrome

so I did ask right at the beginning for my midwife

to put on my medical records that I've declined screening

and I don't want it to be discussed again.

Um, I went in to see a consultant at the hospital and straightaway,

first question - "What are you doing about screening?

So I said, "Well, actually, I've asked for it to be put on my notes

"that I don't want to discuss it any more," and she said,

"Yes, I did see that, but I wanted to talk to about it anyway."

It's hurtful. You know, I love Scarlett. She's amazing.

Why wouldn't I want another child exactly like her?

I... Well, I don't... I hate the word "screening" all of a sudden.

-I know, I know.

-I chose to have the tests but I thought best to be prepared,

so that then I've got the right teat in and I've got a hospital expresser

and all of those things.

Now, cos I know the attitude of the medical profession,

if this baby does have Down's syndrome,

almost to protect ourselves, I don't want them to know that,

-so that they can't then...

-That's so interesting.

You are choosing not to know, not because YOU would do anything

with that information, but to protect yourself from the doctors...

-Yeah. Yes.

-..who you feel would harass you.

It totally comes from their, really, lack of understanding

of what it's actually like to have a child with Down's syndrome.

Yeah.

Yes.

Obviously, not all doctors are like that,

but it's a bit worrying if there are some mothers feeling pressure

from medics to change their minds.

If someone always keeps asking you something,

it's going to shake your resolve, isn't it?

So, let's say I... I know, let's act out a little drama,

because I'm also a screenwriter.

Yeah. OK, so we have person one.

Happy, pregnant mother.

This lady is called...

..Francoise, and Francoise is moving to England and she has met...

Er...

He looks cool, doesn't he, like Raul.

She's met Raul.

They're in a bar, they've got drinks...

and biscuits.

So Francoise says "Ah, Raul, you are English,

"it's very exciting to meet you.

"I am moving to England, I would like to move to Kent."

Raul goes, "Kent?" She goes, "Yes, what?"

He goes, "Kent?"

She says, "But I like castles, I like tomatoes,

"I like all the greenery."

"Kent? Are you sure? Kent?" "Yeah, why, what's the problem with Kent?"

But if every time these two meet and every time she mentions Kent

he's negative about it, because he's, you know, English -

he may never have been to Kent -

she's just going to feel more and more insecure about her decision

and I just feel that it's a bit like that, really.

You assume that the doctors know.

The grand irony of course is that all this focus on screening

is happening when people with Down's syndrome

are achieving more than ever before.

This is a whole pretend street.

Yeah, on set, mate.

Britain's most famous pretend street, Coronation Street.

And I'm here to meet Liam Bairstow, who's an actor with Down's syndrome,

who's just landed a six-month contract,

and they're just filming over there so I might be quiet.

OK, here we go then, guys, standby, please.

And action.

You're right, she's lost her mind. She's fallen for a Scotsman

and she's heading for the Highlands.

Can I buy you a drink?

-Make it a large one.

-Let's get drunk.

Uh-uh, no need for that.

And we'll cut there, that's great. Well done, you chaps.

-Cheers, Liam, good lad.

-Thank you very much, mate, see you soon.

-Thank you.

-Cheers.

Your family must be very proud.

Every time I watch Coronation Street with my mum, she can't stop crying.

It's like every single time I'm on TV, she really embarrasses me

like, saying, "Oh, look at my baby son."

I'm like, "Mum, will you pack it in?"

Do you feel that people see your Down's syndrome first or they see

-you as an actor first?

-They see me as an actor.

-And how's it going?

-Really well.

-Fantastic, do you love it?

-I love it here.

-Part of my dream is getting, like, an award.

-Yeah.

And probably get a girlfriend out of it and all!

SALLY CHUCKLES

Which would be decent enough. That's all I want, really.

-And award and a girlfriend. Yeah.

-That's all I want, really.

'Just like Leonardo DiCaprio.'

The opportunities that Liam now has are no accident.

They've been hard-won.

People with Down's syndrome weren't even allowed to go to school

until 1970, and not allowed in mainstream school until 1981.

Today, Olly and I are meeting one of the people who helped

pave the way for this to happen.

I'm going to meet Sue Buckley who is...

Now, the name may not mean anything to you, but she is actually a giant

in the field of Down's syndrome, not just in the UK, but globally.

She's done so much to change the lives of people with Down's syndrome.

And Olly's not that excited currently cos it's about

five in the morning but...

..well, you know, for me it's a big day.

'Professor Sue Buckley has been pioneering teaching methods

'for children with Down's syndrome since the '70s.'

Come on, it's a fun treat.

It's a fun treat, is it?

'Her research has led to a UK-wide network of speech

'and language classes being set up,

'classes like the one Olly and I are going to today.'

-Hi there.

-Hello, Olly.

-How are you?

-Lovely to meet you too.

-My name's Sue.

-Hello Sue.

I've got one for you, one for you, one for you.

-Would you like one?

-Yes, please.

-There you go.

'What we've learned is it's a profile'

of strengths and weaknesses.

The simple message is learning from listening is difficult,

we have strengths as visual learners,

and just applying that has made a big difference.

Could this be me?

-Ready?

-Yes, go.

-Elamee...

-Elmer...

"Elmer was yellow and orange and red and pink and purple

"and blue and green..."

'According to Sue, nowadays some 80%, that's four-fifths

'of people with Down's syndrome, could learn to read

'if taught in the right way, and so with the right support,

'the majority can go through mainstream schools,

'get work and live independent, ordinary lives.'

So, I mean, that leads us on to the question on screening.

Do you have any view on the national screening programme?

We don't believe that a diagnosis of Down's syndrome should be

a reason for termination.

Nobody's discussed it with adults with Down's syndrome,

many of whom can now read, understand the issues,

and realise that as a group there is a large proportion, particularly

in the medical community, who think their lives aren't worth living.

But there was never, and has never been, a public, ethical debate.

I think there definitely ought to be a debate.

I'm amazed to hear that 30 years ago, the government just decided

to introduce screening for Down's syndrome with no public discussion.

It was the very same time that Sue's research was making inclusion possible.

-Good morning, Olly!

-Morning.

-How are you?

-Good.

-Nice to see you.

Since then, it's become commonplace for people with Down's syndrome

to go to mainstream school.

But the science of screening has also been developing.

And some are saying it's at the point of threatening

the very existence of the Down's syndrome community.

So what's about to happen with screening?

Goodness me, I'm so glad you asked, Claire.

Well, at the moment, if you're an average UK mother,

let's say you're 30.

Your baby grows. It becomes a raspberry,

and then it becomes a grape.

Now, at about between 11 and 13 weeks, you go for your scan

and you have some blood tests.

Now, you're going to recognise this procedure from earlier in the programme.

This is a pretty good screen,

it catches 85% of all babies with Down's syndrome,

but as you can see, the odd Brussels sprout with Down's syndrome can get through.

The only way of knowing for sure whether or not your baby

has Down's syndrome is to have an invasive diagnostic test

which would happen somewhere between pear and grapefruit,

and so here's one I prepared earlier.

Amniocentesis is when your doctor would take,

collect, some of the fluid around the baby in the,

what you will recognise easily as the amniotic sac.

Obviously there is always the fear that that little pear in there

will be harmed.

But now there has been an amazing scientific breakthrough.

This sieve represents non-invasive prenatal testing.

It can tell whether your baby has Down's syndrome with 99% accuracy

as early as here.

So what this is going to mean is that more and more women

are going to know that the baby they are carrying has Down's syndrome

in pregnancy, and if we remember

that most women who know for sure terminate, presumably this is

going to mean far fewer babies with Down's syndrome being born.

In the UK, this new non-invasive test is being developed

by Lynne Chitty at Great Ormond Street.

She's Britain's only professor of genetics and foetal medicine.

I need to hear her take on the possible consequences of this new test.

My lines, I'm learning my lines.

How HAS this new screening test come about, and why?

I can do better than that.

HOW has this new screening test come about and WHY?

No, that's too much.

How has this new SCREENING test come about AND why?

That's better.

'The statistics for termination rates are complicated and disputed

'by both sides of the debate, but since the new test

'has been available in the private sector,

'the Department of Health has reported that termination rates

'for Down's syndrome have gone up by almost a quarter.

'Professor Chitty is proposing that this new test be rolled out on the NHS.

'She's done a study and presented her research to the National Screening Committee

'who will announce their decision in the next few days.'

-Hello there.

-Hi.

-I'm Sally..

-And I'm Lynne Chitty.

-Nice to meet you.

-Hello, very nice to meet you.

-This is the HiSeq.

-Oh, right.

This is the machine which sequences the DNA.

We have developed this test ourselves,

so this is not one of the commercial companies doing it.

We did that as part of the study to show that it could be done

in an NHS laboratory,

that you didn't have to be sent to America or wherever to be tested.

OK.

And the accuracy, what is it at the moment,

97, 98, 99, what's the accuracy?

It's about 99, it will detect about 99% of all cases.

'From the outside, to me, it seems like there is'

no distinction being made between Down's syndrome and a disease.

Whereas, to me, Down's syndrome is a type of person.

-So you wouldn't screen out, I don't know...

-Can I just stop you there?

You have just used the word "Screen out",

I do not think that we are screening out.

On the contrary, I really do not think

we are going to be screening out Down's syndrome.

I find it quite distressing. I had a journalist phone me up and say,

"You're going to annihilate Down's",

well, I don't think that's going to happen.

So, erm... Well, explain to me why that isn't going to happen then.

Because the figures say the opposite, don't they? At the moment.

Well, you see, the trouble is, everybody is looking at

hypothetical scenarios, they are looking at "what-if" situations.

So one of the reasons why we did our study was because we needed

to stop the "what-ifs" and actually look at what does happen

in practice when you give women the option.

So we found there was a lot of women who are actually using

the NIPT test to find out whether their baby has got Down's syndrome,

inform themselves and carry on with the pregnancy.

If you look at our statistics, small numbers,

it will not significantly change the live birth rate,

so I don't think you can say that at the moment,

you have to wait and see what happens.

It's quite a high cost if it is...

It's not a high cost at all,

we showed very clearly that you can implement this...

Sorry, I wasn't meaning the financial cost.

I mean this is an experiment that may result in people choosing

not to terminate and just choosing to know, OR it may result in

a catastrophic result on the Down's syndrome population.

Well, the pilot study would suggest it is not going to result

in the latter.

-I think, so you have...? How old is your son?

-11.

-So he is 11.

-Mm.

How do you feel about...

..later on in life...?

Because he is likely to outlive you,

so what does that prospect hold for you?

Well, I'm actually...

I just feel that the answer to that is not termination.

The answer to that is, if we have a society that is unable

to care for people, then the problem is not the person.

She was at enormous pains to say that screening

wasn't a screening out thing.

Oh, dear, but it's still really sad, isn't it?

It's just, you know, it's just horrible.

The reality that we live in a world where...

I don't know, I sort of feel like people with Down's syndrome

are a type of person, it doesn't feel like...

It's not a disease.

And the type of person that Olly is - but not just Olly -

the type of characteristics that these people share are so benign.

I feel like you read encounters of Western explorers and the dodo,

where this kind, nice, curious bird comes up

and then just gets wiped out.

And, eh, through not being suspicious enough.

Or violent enough.

But, yeah, anyway...

I don't feel particularly reassured about NIPT.

I'm worried we might be gambling with society's diversity.

So what happens when almost everyone screens?

Well, wouldn't you know? There's a place that can tell us.

What do we know...? The thinking shot.

What we know about Iceland?

Well, we know that it has lots of mountains.

SHE LAUGHS

And some ice.

But it also has lots of hot stuff, by which I mean lava.

It's a land of contradictions.

Here they provide some of the best care and opportunities

for disabled people in the world.

But over the last five years,

100% of people have chosen to terminate for Down's syndrome.

100%.

That's, like, everyone.

If this is the direction that the UK is heading, then I wonder

what it must be like to have

three copies of chromosome 21 and live here.

Hi. Hi, Halldora, I'm Sally.

'32-year-old Halldora is one of the few people

'with Down's syndrome in Iceland.

'Her story hit the headlines when she wrote an article

'protesting her right to life.'

-Would you show us your exhibition?

-Yes, of course.

'It prompted photographer Sigga Ella to take 21 portraits of some of

'Iceland's remaining people with Down's syndrome.'

I found Halldora's article online.

Going through her thoughts, she is basically saying that,

though she has a disability,

it doesn't define her as a person, you know?

How does it feel to know that people

discuss whether or not...

Down's syndrome is OK to live with?

SHE SPEAKS ICELANDIC

She thought that they were coming after her life.

You are sighing.

SHE MIMICS SIGHING DEEPLY

And whenever I met with the producers to talk about

this programme, I was doing that sighing.

I couldn't talk about it for a very long time.

It's great that you speak out.

It's great that you...say something.

(Yes.)

It isn't always easy.

We have our ups and downs, and we have worries, but that's life.

Life IS up and down.

Aww.

I've been wanting to hug you the whole time,

but I thought it was a bit forward.

Aww. Lovely girl.

Lovely girl.

Halldora speaks two languages, she's got a job,

she's hoping to marry her long-term boyfriend this summer.

It upsets me that she has to justify her existence.

Imagine if you had to do that.

Maybe it's because they're stuck on an island in the middle

of the Atlantic and there's only 300,000 Icelanders to choose from,

but they do seem a bit preoccupied with genetics here.

I've come to a laboratory on the outskirts of Reykjavik.

No, that's not me, but thank you.

There I am.

Somewhere in this building, there's a man called Kari Stefansson,

who now has enough information

to predict the genetic code of everybody in Iceland.

SHE KNOCKS ON DOOR

Come in.

-Hi there.

-Hello.

-Nice to meet you.

-Nice to meet you.

-I'm Sally.

-I'm Kari.

Everyone is interested in this kind of research.

It is inherent in man to try to figure out as much

about himself as possible.

So you can predict a probability of somebody getting good grades

-in school, of somebody inheriting various diseases?

-Yes.

The only thing this is going to do is lead to knowledge.

Let's go back a step and say, em, so the reason we're in Iceland

is because you have a screening programme for Down's syndrome...

-Mm-hmm.

-..and of the pregnancies that are discovered,

100% of the identified pregnancies are terminated.

And, eh, in some people's eyes, that's successful.

-And in...

-I'm not entirely sure that it is successful.

The statistics is, erm...

Is earth-shattering, basically.

I think it is, in many ways, not particularly thoughtful.

I'll tell you that the guy who manages this building,

our janitor, who is an absolutely wonderful person,

he has a son who has Down's syndrome,

and there is hardly anything more beautiful than seeing

the two of them together,

because there is so strong bond and so much love.

And somehow, in our culture,

it has become accepted to abort Down's syndrome foetuses.

Which, I think, is pretty merciless, in many ways.

I'm not entirely sure it's correct.

The only correct thing about it is I believe the woman should be

the individual to decide whether she wants to terminate pregnancy or not.

Do you agree with that?

I agree with that, I love that you think that.

-Anything else is illogical.

-Yeah.

Yeah.

-CHUCKLING:

-You're very serious about this.

-Yeah, is that bad?

-No, that's good, I actually like that.

This is one of the ways in which you are trying to take responsibility.

Iceland's certainly got me thinking.

Why is Down's syndrome the disability

it's socially acceptable to terminate?

And how do we come back from that?

I've landed back in the UK to the news

that the National Screening Committee

have made their recommendations.

"The most exciting development in pregnancy care for decades."

"Win on Down's testing." A win...

"A win", say The Sun.

"..are winning.

"Mums-to-be are to be offered a test for Down's syndrome

"on the NHS after Great Ormond Street Hospital published results

"showing the test was safe and 99% accurate.

"Lyn Chitty...", bla bla bla.

Reading these reports, there's no mention of the impact

these tests could have on the Down's community at all.

I feel like, just as in Iceland, we're somehow being forgotten about.

Looking at the responses of mums to the news,

lots of people really upset, crying.

I've never been a very angry person, but I'm feeling quite angry.

Like, on a scale of one to ten... I'm nine.

And when I hit ten, there's a really good chance I'll go green,

start smashing things up.

The new non-invasive prenatal test was announced to be

rolled out last week.

Lorded by clumsy media as a great step towards

eradicating this "debilitating condition".

We must attend, more importantly than ever, to our use of language.

With the decision on NIPT made,

I've come to hear a woman who's been invited to talk to the NHS directly.

Hi, Hayley, nice to meet you. Hi, Natty.

'Hayley Goleniowska has heard hundreds of stories about how

'Down's diagnoses are delivered

'through her blog, called Downs Side Up.

'She started writing it to share her positive experiences

'of living with her daughter Natty.'

Post it.

SHE QUACKS

That's so hilarious.

SALLY LAUGHS

Thank you.

You know, we didn't have an antenatal diagnosis,

but I know how fearful of Down's syndrome I was when I was pregnant,

and if I had trusted the medical professionals,

I really don't know what I would have done.

I don't know if I'd be sitting here today.

Your words count, and the thoughts and beliefs behind them count too.

As NIPT means that more women will receive a Down's diagnosis,

Hayley feels there's now a pressing need

for that news to be better delivered.

The following are direct quotes.

To other families, not to us.

"I can book you in for a termination in the morning."

"I can't treat you if you continue with this pregnancy."

"She's really cute, but you don't want another one like that, do you?"

Our youngest daughter Natalia was born on our bathroom floor.

What followed is etched in my heart and frozen in time forever.

The look of panic on the midwife's face.

My brain dared not formulate a question, because I was

terrified of hearing what I thought was my worst nightmare.

What I had been conditioned to fear.

SHE SIGHS

Our community midwife wept. And there was no need to be sorry.

Natty was not a risk. She's not like a fire or a flood.

She certainly was NOT a page in a medical journal.

-TEARFUL:

-How I wish I could go back and relive that day,

knowing what I now know.

Thank you.

APPLAUSE

Well, that certainly had an impact.

Hayley had the entire room of nurses and midwives in tears.

And me. It took me back to when Olly was born. My nurse cried too.

That's very beautiful.

It wasn't until ten days after Olly was born that we got our diagnosis.

-Olly?

-Yes.

I love being your mummy.

But I've spoken to other mothers, and whenever it happens,

before or after birth, the feeling of shock is pretty universal.

What Hayley has made me realise is,

it's such a sensitive time too, how that news is delivered to you,

and crucially, what information is given,

must have a bearing on what women decide to do next.

PHONE RINGS

Antenatal Results and Choices, can I help you?

Jane Fisher runs the only counselling charity

the NHS currently point pregnant women towards

when they get a Down's diagnosis.

They are likely to be fielding more and more calls

as the new test is rolled out.

How educated are your helpline counsellors about Down's syndrome?

I wouldn't pretend for a moment - we've got

a small helpline team of four of us - and I wouldn't ever pretend,

and we wouldn't pretend, that we are absolutely up to date with

what living with Down's syndrome means in all its aspects.

So let's say to you, "I'm worried about how the learning disability

"is going to affect this baby", what do you then say to me?

Well, we're not going to say, "You'll be able to cope",

we'll say, "How worried are you?

"Do you feel you could continue the pregnancy and deal with that?

"Can you deal with that level of uncertainty,

"or do you feel you need to end...?"

There's a gap there in the logic, isn't there?

So if I say, "I'm worried about the learning difficulty",

you go straight to termination from that.

Whereas, I'm saying I'm worried about the learning difficulty.

You're putting your cards on the table, Sally,

which is absolutely right,

in that we appreciate that people who have children

with disabilities or are advocates for people with disabilities

really struggle with prenatal diagnosis

and decisions to terminate.

In Iceland, there is now 100% termination,

so that suggests to me that the information being given out -

which is partly why is interesting to come and see you -

-the information being given out is not reflective of...

-OK.

..how it is to be a person with Down's syndrome.

But we are not directive, Sally, we are not pushing people

in directions, we're hearing from them, where they are.

I guess our angle is it's about choice.

And when... And I have, I would say in my 14 years at ARC,

I have spoken to hundreds of women who have made the decision

to end the pregnancy for Down's syndrome.

And none of those women make the decision lightly.

What they worry about is they can't know exactly how their child

is going to be affected.

They can't know exactly the level of learning disability

or potential associated health issues.

They feel they can't manage that in their lives,

or don't want to manage that in their lives,

I think that will always be with us.

Having spoken to Jane, I feel I really need to talk to a woman

who has made the decision to have a termination herself.

-Hi, nice to meet you.

-Hi, I'm Sally.

-Come in.

'Kate is now pregnant again.

'I'm intrigued to find out what she knew about Down's syndrome

'when she made her decision.'

-Where shall we sit?

-Let's go on the couch.

You've just got to do what you feel is right, haven't you?

By going down the termination route,

we felt that that was the best thing for the baby.

-I was 25 weeks when I delivered Max.

-How does it work with a termination?

You say you take a pill?

Yeah, so you take a tablet that starts to break down placenta,

and then I had an injection to stop his heart, so it's instant.

One minute, you could feel him wriggling around

and then the next second, he's gone. Erm...

Sorry.

Got me too! Got me too.

It's not an easy subject to discuss,

goodness me, you're incredibly brave to discuss it.

-And do you feel that you had an informed choice about this?

-Yeah.

You had as much information as you needed?

Yeah, rather than the clinical research

and a doctor saying, "This is what it will look like",

what I was more interested in was family stories, so we looked

at clips on YouTube and I read news articles and things like that,

blogs by mums and stuff, so you kind of see

some of the difficulties people are going through.

There was one woman,

her five-year-old's still not walking and he's very heavy,

and she's having to deal with him having fits everywhere.

If my child was affected as much as he was,

I would feel really guilty about that, having been given the choice.

There were only very few stories at that level.

There was loads of positive stuff out there,

and it was the positive stuff that really threw me.

MUSIC PLAYS IN CLIP

'Chelsea has won several titles, including winning

'the Special Olympics National Championship title four times,

'and the International Down's Syndrome World Championships title.

'Chelsea started practising 16 hours a week.'

'I think she just puts in that much more work

'to get where she needs to be.'

I am unbroken.

-I wonder if we have very different reactions to that.

-Probably.

-Yeah.

You think that's...?

It's very inspirational, and she should be so proud of herself,

and she's worked very hard to get there, but it was that that kind of

made me realise how much harder they have to work to reach their goals.

That's not what I want for my son.

Even the best-case scenario isn't potentially what I want for my son.

And, you know, I just...

-I don't...

-Do you mind if I ask you the really difficult question?

-Go on.

-So you think her life would have been better not happening?

No, not at all.

I believe it's every parent's choice

to decide what's right for their child.

I don't believe it's wrong

to bring Down's syndrome children into the world.

She's got a great quality of life, she's loving life,

-she's at the top of her game...

-Yeah.

No, I don't believe that's wrong at all,

it's just not what I would want for my child.

'She's a reasonable woman, and she's right...'

She's right that the choice is hers.

Em, she's right that the choice is hers,

she's right that opportunities for people with Down's syndrome

are limited, she's right that bringing up a child

with Down's syndrome requires more effort and more engagement.

Erm...

But I think she's wrong that an increase in choice

means greater happiness. Cos I don't think it does.

And I think if you want a happy child, you can guarantee

you're having a child that's predisposed to happiness.

So, anyway, what I'm saying to you, Clare,

is that I found that much harder than I was anticipating.

And, eh, yeah, I'd like to go home now!

'Kate didn't want a child like mine.

'That was difficult for me to hear.

'The thing I seem to be coming up against is this idea of choice.

'I chose to screen with all three of my children.

'With Olly, I was given a one in 10,000 chance of him having Down's.

'But back then, if you'd asked me whether I could cope

'with a child with a disability,

'I'm not sure whether I would have said yes.

'Now I'd say that having him in my life has changed me

'and my family for the better.

'And that makes me question whether choice is always

'the wonderful thing it's cracked up to be.

'It leaves me wondering - where are all these individual choices

'going to take us?

'What kind of world will Olly be living in when he's my age?'

From what I understand, the new Down's test, NIPT,

is just one small corner in a huge new field of genetics.

So to find out where exactly the science of screening is up to,

I've come to the world's biotech hub -

California.

The double helix. They really love DNA here.

Just as in Iceland,

it turns out things here are moving much faster than I realised.

Come and have a look at what it's called.

"It Can Happen NOW...TO YOU!"

To you.

That could not be more appropriate, because here,

in what I thought was the future but is apparently the present,

we can screen for tons of other things already,

so what's happening to the Down's syndrome community

could happen to you if you have

a history of Alzheimer's in your family,

if you have a history of depression in your family,

if you have a history of obesity or diabetes in your family.

It won't be long before we'll be

able to prenatally screen out people like you.

Oh. A-And me.

Both of us.

SHE LAUGHS

I'm going to meet a scientist called Razib Khan.

He's the first person in the world to sequence an unborn child's DNA.

Yep. SHE LAUGHS

Smooth operator.

'Don't worry, it was his son's.'

-Hey there, Razib, how you doing? I'm Sally.

-Nice to meet you.

Nice to meet you too.

'With his unborn child's complete genetic code to hand, Razib was

'able to screen not only for Down's syndrome,

'but for anything he liked.'

It was a controversial...

Tell me what happened, did you get hauled in?

No, but there was, like, a big controversy in the media,

the university and a lot of people. I'll give you, like...

But you must have known that was going to happen.

No, we weren't totally sure.

You have to understand, I know for a fact that within ten years

most people are going to be doing this,

so it might be scary right now, but this is just the future,

I just brought it forward into your face a little.

I mean, this is like a really extreme version of not being

-able to wait till Christmas, right?

-Yes.

APPROACHING FOOTSTEPS

-Speak of the devil.

-Hello. Hello!

Wow, how nice to meet you. Hiya. He's absolutely gorgeous.

-Congratulations. You're gorgeous.

-It's in the genetics.

-So what kind of child were you hoping for?

-The one I got.

-But what was your win child?

-Healthy.

-Healthy?

-Yeah.

How low down the scale do we go before it becomes an issue?

If they have like a mental or developmental disability,

that was severe...

How about schizophrenia, something like that?

-Mm.

-Or autism.

-I mean, it depends on the severity of these issues.

-You can't tell then?

-Not right now.

-Let's say you had discovered Huntington's...

-Yeah.

Presumably you had this information early.

Yeah, we would have terminated.

So, I don't know if they told you,

I'm a parent of a child with Down's syndrome.

-Down's syndrome is presented as the very worst-case scenario.

-OK.

-My lived experience is, there's no relation to that.

-OK.

So the whole basis of this discussion is a bit dodgy.

Yeah, but that's your opinion.

Other people can have other different opinions,

people can make their own choices. No-one, hopefully,

-is being forced into making any decision they don't want, right?

-Mm.

I mean, do you think we're going to look at people eliminating,

-ending pregnancies...

-Yeah, some people will do that.

Some of it, obviously, seems pernicious to me,

but that's just my opinion as well.

Science has no morality,

science just tells you. You can do what you want with the science.

Razib analysed his son's genome using his laptop at home

two years ago.

He had to leave it processing the data for two weeks solid.

But even since then, DNA sequencing has become far more accessible.

In America, there are already companies who will do it

for you for under 1,000.

The scientist arguably at the forefront of this revolution

is George Church.

He pioneered the method used to sequence the first human genome,

and over his 40-year career

has become known as the Godfather of Genetics.

I might leave my toy microscope that I bought for my child in the car,

cos that might look like I'm not a serious...

LAUGHING: Not a serious person.

I've come to Harvard Medical School in Boston to meet him.

Maybe he can tell me whether science does - or should have -

any morality.

You know we're making this film about Down's syndrome

-and prenatal screening programme.

-Yes.

It seems that there's going to be many, many more things we're

-going to be able to screen for in the very near future.

-Mm-hmm.

So I don't know how, the genie's out of the bottle, I don't know

how one even begins to create ethics around this kind of thing.

Yeah. Well, ethics changes from year to year.

I'm sure that if you had talked about the one million people

that die in cars a year back at the turn of the century,

we might not have cars now.

-Mm.

-Because that would be an unacceptable outcome.

With Down's syndrome, I don't think it's so much

a genie being out of the bag, as much as parents exert

their will, and that depends on what they see on television...

In other words, if they see lots of happy families

with Down's syndrome kids, then they might say, "Hey, I want that."

But I think that, if anything, it goes the opposite direction.

People will not only choose the way their child will be,

but when the child grows up, the child will change themselves.

Genetically. And it's unlikely a child will say,

"Hey, I'd like to be a Down's syndrome kid."

What do you think the future holds for us?

It's all about education. It's not the technology that's the problem.

-No.

-It's the societal pressures

-and market forces that are at work.

-Yes.

If you want to instil certain values,

spread the word that these are actually valuable members

of society, valuable in a very broad sense.

I'm here today not only to make a case for Down's syndrome,

but to spread the idea that all lives matter.

CHEERING AND APPLAUSE

Actually, I've made contact with a person who's already been

telling the world just how valuable life with Down's syndrome is.

It is not a disease. You can't catch it from anyone.

It is just something that happens.

Her name is Karen Gaffney, and she's the world's

best-known advocate for people with Down's syndrome.

But with the Godfather of Genetics' words ringing in my ears...

Oh, no, I'm crying again.

There's just more riding on this meeting than I thought.

It feels like even if this particular encounter

isn't life and death, life and death is hanging around in the air.

You know, maybe there will be someone who...

watches this programme who decides to have

a baby they wouldn't otherwise have had,

or maybe there will be someone who watches this programme

who might have had a baby, and decides they won't.

It all just... I've got an overactive imagination, basically.

SHE SIGHS

Karen and her mum Barbara have agreed to meet me

before I leave Boston.

Hi! Sorry, I'm staring out the window. Hi there.

-Nice to meet you, I'm Sally.

-Hi, Sally, I'm Barb.

Hi, Barb. Hi. How are you, Karen?

How's your son Olly doing?

Oh, thank you, he's doing all right.

You've swum the Channel.

-Yes, I have.

-That must have been horrible.

-THEY LAUGH

-Yeah.

-And have you had a good response from that TED talk?

-I have, yeah.

I can't see how anyone could watch it and keep

very bigoted ideas of Down's syndrome,

you have done such an amazing job.

-I think she was able to...

-Change minds.

..change minds and change hearts,

and just at least get people to question.

Yeah.

When did you realise you had Down's syndrome?

Do you remember what age you were?

I was between six and seven when my mom told me I had Down's syndrome,

and how it takes me longer to learn things than it does other people.

Cos I wasn't quite sure whether to tell Olly or not,

whether to tell his brothers, and I started off thinking,

"Well, I just want it to be normal, so we'll tell them."

And my husband said recently to the youngest, who's four,

"Olly just finds it difficult to

"understand sometimes and he gets angry."

And the little one said, "Like you, Dad?"

THEY LAUGH

That's great.

And it's like, "Yeah, we all find it difficult to understand

"sometimes and we all get angry sometimes."

And this is what humanity is all about,

they're blended into the fabric.

They're all part of the fabric of humanity, not separate,

and I think that's what we need to see.

I think Barbara is dead right.

Of course, not everyone with Down's syndrome is as high-achieving

as her daughter, but they're all people,

they're all part of the fabric of humanity.

The thing to do now is to show that.

And that is why I have decided, in my immense wisdom,

that we should put on a Down's syndrome flash mob

in central London.

LAUGHING: Yep.

What could possibly go wrong?

"Anyone free next Saturday and able to dance?

"Actually, dancing ability not...

"crucial."

SHE LAUGHS

-Hi.

-You came!

Thanks so much for coming.

I'm terrible at it, I'm going to be much worse than all of you guys.

MUSIC: I Like To Move It by Reel 2 Reel

So there we go, it's the end. You made it.

I promised you some interpretive dance, didn't I?

If we're heading towards a world where we choose

more and more who gets born,

I feel like we really need to think about what it is that we value.

And as our powers of choice get greater and greater,

who are those people that society might leave behind?

There's great value in things not being perfect.

There's a crack in everything, that's how the light gets in,

and the imperfections are where humanity is most visible.

DANCERS CHEER

I guess I'll leave you with that thought.

Something to chew on anyway.

-I love you, Mum.

-I love you too. I love you so much.

One, two, three.

-ALL:

-Cheese!