0:00:00 > 0:00:02- Knock-knock.- Who's there?
0:00:02 > 0:00:05- Chicken.- Chicken who?
0:00:05 > 0:00:06Buck-buck!
0:00:06 > 0:00:10THEY LAUGH
0:00:10 > 0:00:11Buck-buck!
0:00:11 > 0:00:12That's rubbish!
0:00:14 > 0:00:16- Knock-knock.- Who's there?
0:00:16 > 0:00:18- 85.- 85 who?
0:00:18 > 0:00:21Doctor!
0:00:21 > 0:00:24'This is Olly, my son.
0:00:24 > 0:00:30'He likes chocolate ice cream, he likes Barcelona football club.
0:00:30 > 0:00:33'He also has Down's syndrome.'
0:00:33 > 0:00:36When Olly was diagnosed 11 years ago,
0:00:36 > 0:00:40I never could have imagined that our family
0:00:40 > 0:00:42was going to end up looking like this.
0:00:45 > 0:00:47Or like this.
0:00:47 > 0:00:50Or like this.
0:00:50 > 0:00:53But although Olly's the reason I started making this film,
0:00:53 > 0:00:55it's not just a film about him.
0:00:56 > 0:00:59It's not just about Down's syndrome, either.
0:00:59 > 0:01:01It's a film that asked the question,
0:01:01 > 0:01:04"What kind of society do we want to live in?
0:01:04 > 0:01:07"And who do we think should be allowed to live in it?"
0:01:07 > 0:01:11And if that all sounds quite heavy, then don't worry.
0:01:11 > 0:01:14There is also some interpretive dance.
0:01:16 > 0:01:19And I should probably warn you at this early stage,
0:01:19 > 0:01:24I've never actually made a documentary before, so...
0:01:24 > 0:01:26No, it's going to be fine.
0:01:26 > 0:01:29It's going to be absolutely... Hold on to your hats, people!
0:01:29 > 0:01:35This programme contains some scenes which some viewers may find upsetting.
0:01:35 > 0:01:37Happy birthday!
0:01:37 > 0:01:40THEY LAUGH
0:01:41 > 0:01:43Oh, Olly!
0:01:43 > 0:01:44Happy birthday.
0:01:44 > 0:01:45SHE LAUGHS
0:01:45 > 0:01:48- This is funny.- Wow!- This is funny.
0:01:48 > 0:01:51THEY LAUGH
0:01:51 > 0:01:54Welcome, people of Great Britain, to my life.
0:01:54 > 0:01:59As you can see, I have three very well-behaved perfect children.
0:01:59 > 0:02:02Um, they respect me deeply.
0:02:02 > 0:02:03They do everything that I say.
0:02:03 > 0:02:07No, no, no, no, no, no. No, no, no.
0:02:07 > 0:02:09No! No, on the page.
0:02:09 > 0:02:12OK, that's not quite true. A lot of it's to do with this guy.
0:02:12 > 0:02:13- Hey, Olly.- Yes?
0:02:13 > 0:02:15- Come here.- Yeah.
0:02:15 > 0:02:17- Say hello.- Hello.
0:02:17 > 0:02:18Nice to meet you.
0:02:18 > 0:02:20SHE LAUGHS
0:02:20 > 0:02:22Shake hands!
0:02:22 > 0:02:24No, Olly. Olly!
0:02:24 > 0:02:26'Yeah, I'm not going to lie to you.
0:02:26 > 0:02:29'Living with Olly does present some challenges.'
0:02:29 > 0:02:33But, you know, I go to work, I go to a sitcom,
0:02:33 > 0:02:35and I'm surrounded by mayhem.
0:02:35 > 0:02:37So I'm kind of used to it.
0:02:37 > 0:02:39Hose time!
0:02:39 > 0:02:40Hose time?
0:02:40 > 0:02:42Oh, oh, no!
0:02:42 > 0:02:44Oh, don't! No!
0:02:44 > 0:02:46Oh, oh!
0:02:46 > 0:02:51Amazingly, I'm not the only one who thinks this isn't a disaster.
0:02:51 > 0:02:56A majority of people with a Down's syndrome family member
0:02:56 > 0:02:58are really happy with their lot.
0:02:58 > 0:03:04I was expecting tragedy, but I've got comedy and that, my friends,
0:03:04 > 0:03:06is where our story begins!
0:03:06 > 0:03:09THEY SHOUT AND LAUGH
0:03:09 > 0:03:11Hey, guys!
0:03:15 > 0:03:19OK, to be more precise, it's HERE where our story actually begins.
0:03:21 > 0:03:24Every year, around half a million pregnant women come to
0:03:24 > 0:03:27a place like this to see their baby for the first time.
0:03:30 > 0:03:32There's a heart beating there.
0:03:34 > 0:03:35The body.
0:03:37 > 0:03:38See the hands.
0:03:39 > 0:03:42'I've come to King's College Hospital in London,
0:03:42 > 0:03:45'to meet some women who are having their 12-week scan.'
0:03:45 > 0:03:46So how are you feeling now?
0:03:47 > 0:03:50Excited. Yeah. Seems more real now.
0:03:50 > 0:03:53'Today's the day when mothers find out
0:03:53 > 0:03:56'when their babies are due and whether they're growing normally.'
0:03:56 > 0:03:58Hi.
0:03:58 > 0:04:01'It's also the day when doctors first test your baby for Down's syndrome.'
0:04:01 > 0:04:04- How old are you now?- I'm 40.
0:04:07 > 0:04:13'You're given a probability that's calculated by measuring the baby and the hormone levels in your blood.
0:04:13 > 0:04:17'It's a bit like gambling odds and getting bad odds is seen as devastating news.
0:04:17 > 0:04:25The white line shows that as a woman gets older, your chances go up.
0:04:26 > 0:04:32Because you're now 40, when you came in the room, the risk was there.
0:04:32 > 0:04:35From the measurements that I have taken, your risk has gone down,
0:04:35 > 0:04:38from one in 69 to one in 301.
0:04:38 > 0:04:40- OK.- This is so far.
0:04:40 > 0:04:43The odds went down, didn't they?
0:04:43 > 0:04:44Yeah, yeah. They did, yeah.
0:04:44 > 0:04:48I'm a geriatric mum, as they call it, so I want to be sure.
0:04:48 > 0:04:49Yeah.
0:04:49 > 0:04:51- I want to have all bases covered. - I will leave you.
0:04:51 > 0:04:53- Thank you very much. - Thank you very much.
0:04:53 > 0:04:55- Very nice meeting you. - Thank you.- OK.
0:04:56 > 0:04:58In the last ten years,
0:04:58 > 0:05:03the number of people terminating for Down's syndrome has gone up by 40%.
0:05:03 > 0:05:06Now, nine out of ten British women terminate when they receive
0:05:06 > 0:05:09a positive diagnosis.
0:05:09 > 0:05:10Of course, I have a biased opinion,
0:05:10 > 0:05:14because I have a child with Down's syndrome who I love more than life,
0:05:14 > 0:05:16but my big question at the beginning
0:05:16 > 0:05:21of this is what's so very dreadful to the world about Down's syndrome?
0:05:21 > 0:05:25So let's go and ask Professor Nicolaides about that.
0:05:25 > 0:05:27- SHE KNOCKS - Yep?
0:05:27 > 0:05:31'Professor Nicolaides is a foetal medicine expert and has been
0:05:31 > 0:05:35'developing more effective screening tests for the last 25 years.'
0:05:36 > 0:05:40Would you mind telling us more about why Down's syndrome
0:05:40 > 0:05:41has been focused on?
0:05:41 > 0:05:46From my point of view, the essence is that there is a demand
0:05:46 > 0:05:49and we believe that the main objective
0:05:49 > 0:05:52is to provide women with information.
0:05:52 > 0:05:55I have learned over the years that for some people,
0:05:55 > 0:06:00having a baby with Downs is an intolerable event.
0:06:00 > 0:06:05All I want to make this programme for is to say, "You know, it's really not a catastrophe."
0:06:05 > 0:06:08Why is everybody behaving like it's a catastrophe?
0:06:08 > 0:06:11Um, whether they have their own perceptions
0:06:11 > 0:06:16of what the condition is or the system has not emphasised to them
0:06:16 > 0:06:19the goodness that can come from having a baby with Downs,
0:06:19 > 0:06:21I do not know, but it is a fact,
0:06:21 > 0:06:24it is associated with mental disability
0:06:24 > 0:06:29and, importantly, they live for very many years,
0:06:29 > 0:06:34so if we think of it as a burden to the family or to the society,
0:06:34 > 0:06:39it is a burden that is going to last for a long time.
0:06:45 > 0:06:47'A burden that lasts for a long time.
0:06:47 > 0:06:49'That's not exactly how I see Olly.
0:06:51 > 0:06:55'But legally, you can terminate a Down's pregnancy right up to birth,
0:06:55 > 0:06:58'as Down's syndrome is classed as a severe disability.
0:06:59 > 0:07:02'And if you look at the leaflets the NHS hand out to mothers
0:07:02 > 0:07:05'when they get the diagnosis, it does sound severe.'
0:07:07 > 0:07:12I mean, I... You know - complications, heart problems,
0:07:12 > 0:07:14gut problems, hearing problems,
0:07:14 > 0:07:17vision problems, thyroid problems, dementia.
0:07:17 > 0:07:20I think that just makes you frightened.
0:07:20 > 0:07:24A medical description will only list all the possible things that could go wrong.
0:07:24 > 0:07:28And it's not then compared with the list of all the possible things
0:07:28 > 0:07:30that could go wrong with a typical person.
0:07:30 > 0:07:34I mean, how would you describe yourself?
0:07:34 > 0:07:38Are you chromosomally typical?
0:07:38 > 0:07:41Are you neurotypical?
0:07:41 > 0:07:44I'm a neurotypical person with 46 chromosomes
0:07:44 > 0:07:49who had childhood asthma and who has a family history of glaucoma.
0:07:51 > 0:07:52Does that describe me?
0:07:53 > 0:07:57'To me, Down's syndrome is much more than a list of possible health problems,
0:07:57 > 0:08:00'but that's cos I know Olly.
0:08:00 > 0:08:05'But what actually happens inside his cells that makes him different?'
0:08:05 > 0:08:09In every cell, there are meant to be 23 pairs of chromosomes.
0:08:09 > 0:08:14But somebody who has Down's syndrome has an extra copy of chromosome 21.
0:08:16 > 0:08:19Chromosomes contain information that makes us who we are.
0:08:19 > 0:08:23So if you have an extra one, it means you develop differently.
0:08:23 > 0:08:28There are some common features like being a bit smaller than average,
0:08:28 > 0:08:30having a smaller mouth, so your tongue may stick out,
0:08:30 > 0:08:33almond-shaped eyes and some level of learning disability.
0:08:33 > 0:08:37But not everyone looks the same or is affected in the same way.
0:08:37 > 0:08:41Just like all of us, there's an endless variety.
0:08:43 > 0:08:45'Well, not endless.
0:08:45 > 0:08:49'There are now only 40,000 people with Down's syndrome in the UK.'
0:08:50 > 0:08:52But not everyone chooses to screen.
0:08:52 > 0:08:57And I'm about to meet a mum who's consciously opted out of the system.
0:08:59 > 0:09:02So, do I talk to you and say, "Here we are at the house!"
0:09:02 > 0:09:04Or is that like Through The Keyhole?
0:09:04 > 0:09:06That's a bit like Through The Keyhole.
0:09:06 > 0:09:07THEY LAUGH
0:09:07 > 0:09:10We're just going to off, like, au naturel.
0:09:10 > 0:09:11Au naturel. OK.
0:09:20 > 0:09:23Hi, there, Emma. Hiya, how are you? Nice to meet you.
0:09:23 > 0:09:25Nice to meet you. Come on through.
0:09:25 > 0:09:28So, I can't help noticing that you're pregnant.
0:09:28 > 0:09:29SHE LAUGHS
0:09:29 > 0:09:31How many weeks are you?
0:09:31 > 0:09:3228 and a half weeks.
0:09:32 > 0:09:3428 and a half weeks.
0:09:34 > 0:09:38The GP told me they want to screen me nice and early to make sure this baby doesn't also have it.
0:09:42 > 0:09:44How are you?
0:09:47 > 0:09:48'It's different for everybody.
0:09:48 > 0:09:52'For me, I don't feel like the screening would really tell me that much.'
0:09:52 > 0:09:55I have experience of having a child with Down's syndrome
0:09:55 > 0:09:58so I did ask right at the beginning for my midwife
0:09:58 > 0:10:00to put on my medical records that I've declined screening
0:10:00 > 0:10:03and I don't want it to be discussed again.
0:10:03 > 0:10:07Um, I went in to see a consultant at the hospital and straightaway,
0:10:07 > 0:10:10first question - "What are you doing about screening?
0:10:10 > 0:10:13So I said, "Well, actually, I've asked for it to be put on my notes
0:10:13 > 0:10:15"that I don't want to discuss it any more," and she said,
0:10:15 > 0:10:18"Yes, I did see that, but I wanted to talk to about it anyway."
0:10:18 > 0:10:21It's hurtful. You know, I love Scarlett. She's amazing.
0:10:21 > 0:10:24Why wouldn't I want another child exactly like her?
0:10:24 > 0:10:26I... Well, I don't... I hate the word "screening" all of a sudden.
0:10:26 > 0:10:30- I know, I know. - I chose to have the tests but I thought best to be prepared,
0:10:30 > 0:10:33so that then I've got the right teat in and I've got a hospital expresser
0:10:33 > 0:10:35and all of those things.
0:10:35 > 0:10:38Now, cos I know the attitude of the medical profession,
0:10:38 > 0:10:40if this baby does have Down's syndrome,
0:10:40 > 0:10:44almost to protect ourselves, I don't want them to know that,
0:10:44 > 0:10:46- so that they can't then... - That's so interesting.
0:10:46 > 0:10:51You are choosing not to know, not because YOU would do anything
0:10:51 > 0:10:54with that information, but to protect yourself from the doctors...
0:10:54 > 0:10:56- Yeah. Yes. - ..who you feel would harass you.
0:10:56 > 0:10:59It totally comes from their, really, lack of understanding
0:10:59 > 0:11:02of what it's actually like to have a child with Down's syndrome.
0:11:02 > 0:11:04Yeah.
0:11:04 > 0:11:05Yes.
0:11:07 > 0:11:10Obviously, not all doctors are like that,
0:11:10 > 0:11:13but it's a bit worrying if there are some mothers feeling pressure
0:11:13 > 0:11:16from medics to change their minds.
0:11:16 > 0:11:19If someone always keeps asking you something,
0:11:19 > 0:11:21it's going to shake your resolve, isn't it?
0:11:21 > 0:11:25So, let's say I... I know, let's act out a little drama,
0:11:25 > 0:11:27because I'm also a screenwriter.
0:11:27 > 0:11:30Yeah. OK, so we have person one.
0:11:34 > 0:11:36Happy, pregnant mother.
0:11:36 > 0:11:39This lady is called...
0:11:40 > 0:11:46..Francoise, and Francoise is moving to England and she has met...
0:11:46 > 0:11:47Er...
0:11:47 > 0:11:50He looks cool, doesn't he, like Raul.
0:11:50 > 0:11:51She's met Raul.
0:11:51 > 0:11:55They're in a bar, they've got drinks...
0:11:55 > 0:11:58and biscuits.
0:11:58 > 0:12:00So Francoise says "Ah, Raul, you are English,
0:12:00 > 0:12:03"it's very exciting to meet you.
0:12:03 > 0:12:07"I am moving to England, I would like to move to Kent."
0:12:07 > 0:12:12Raul goes, "Kent?" She goes, "Yes, what?"
0:12:12 > 0:12:13He goes, "Kent?"
0:12:13 > 0:12:17She says, "But I like castles, I like tomatoes,
0:12:17 > 0:12:19"I like all the greenery."
0:12:19 > 0:12:22"Kent? Are you sure? Kent?" "Yeah, why, what's the problem with Kent?"
0:12:22 > 0:12:26But if every time these two meet and every time she mentions Kent
0:12:26 > 0:12:30he's negative about it, because he's, you know, English -
0:12:30 > 0:12:31he may never have been to Kent -
0:12:31 > 0:12:34she's just going to feel more and more insecure about her decision
0:12:34 > 0:12:37and I just feel that it's a bit like that, really.
0:12:37 > 0:12:38You assume that the doctors know.
0:12:45 > 0:12:48The grand irony of course is that all this focus on screening
0:12:48 > 0:12:51is happening when people with Down's syndrome
0:12:51 > 0:12:54are achieving more than ever before.
0:12:54 > 0:12:56This is a whole pretend street.
0:12:56 > 0:12:58Yeah, on set, mate.
0:12:58 > 0:13:02Britain's most famous pretend street, Coronation Street.
0:13:02 > 0:13:06And I'm here to meet Liam Bairstow, who's an actor with Down's syndrome,
0:13:06 > 0:13:09who's just landed a six-month contract,
0:13:09 > 0:13:12and they're just filming over there so I might be quiet.
0:13:14 > 0:13:17OK, here we go then, guys, standby, please.
0:13:19 > 0:13:21And action.
0:13:21 > 0:13:24You're right, she's lost her mind. She's fallen for a Scotsman
0:13:24 > 0:13:27and she's heading for the Highlands.
0:13:27 > 0:13:28Can I buy you a drink?
0:13:28 > 0:13:31- Make it a large one. - Let's get drunk.
0:13:31 > 0:13:32Uh-uh, no need for that.
0:13:32 > 0:13:34And we'll cut there, that's great. Well done, you chaps.
0:13:34 > 0:13:37- Cheers, Liam, good lad.- Thank you very much, mate, see you soon.
0:13:37 > 0:13:38- Thank you.- Cheers.
0:13:39 > 0:13:41Your family must be very proud.
0:13:41 > 0:13:45Every time I watch Coronation Street with my mum, she can't stop crying.
0:13:45 > 0:13:49It's like every single time I'm on TV, she really embarrasses me
0:13:49 > 0:13:52like, saying, "Oh, look at my baby son."
0:13:52 > 0:13:55I'm like, "Mum, will you pack it in?"
0:13:55 > 0:13:58Do you feel that people see your Down's syndrome first or they see
0:13:58 > 0:14:02- you as an actor first?- They see me as an actor.- And how's it going?
0:14:02 > 0:14:05- Really well.- Fantastic, do you love it?- I love it here.
0:14:05 > 0:14:09- Part of my dream is getting, like, an award.- Yeah.
0:14:09 > 0:14:12And probably get a girlfriend out of it and all!
0:14:12 > 0:14:14SALLY CHUCKLES
0:14:14 > 0:14:17Which would be decent enough. That's all I want, really.
0:14:19 > 0:14:23- And award and a girlfriend. Yeah. - That's all I want, really.
0:14:23 > 0:14:25'Just like Leonardo DiCaprio.'
0:14:27 > 0:14:30The opportunities that Liam now has are no accident.
0:14:30 > 0:14:32They've been hard-won.
0:14:33 > 0:14:36People with Down's syndrome weren't even allowed to go to school
0:14:36 > 0:14:41until 1970, and not allowed in mainstream school until 1981.
0:14:41 > 0:14:45Today, Olly and I are meeting one of the people who helped
0:14:45 > 0:14:46pave the way for this to happen.
0:14:46 > 0:14:49I'm going to meet Sue Buckley who is...
0:14:49 > 0:14:53Now, the name may not mean anything to you, but she is actually a giant
0:14:53 > 0:14:58in the field of Down's syndrome, not just in the UK, but globally.
0:14:58 > 0:15:02She's done so much to change the lives of people with Down's syndrome.
0:15:02 > 0:15:05And Olly's not that excited currently cos it's about
0:15:05 > 0:15:07five in the morning but...
0:15:10 > 0:15:12..well, you know, for me it's a big day.
0:15:12 > 0:15:16'Professor Sue Buckley has been pioneering teaching methods
0:15:16 > 0:15:19'for children with Down's syndrome since the '70s.'
0:15:19 > 0:15:22Come on, it's a fun treat.
0:15:22 > 0:15:23It's a fun treat, is it?
0:15:23 > 0:15:26'Her research has led to a UK-wide network of speech
0:15:26 > 0:15:29'and language classes being set up,
0:15:29 > 0:15:32'classes like the one Olly and I are going to today.'
0:15:32 > 0:15:38- Hi there.- Hello, Olly.- How are you?- Lovely to meet you too.
0:15:38 > 0:15:40- My name's Sue.- Hello Sue.
0:15:40 > 0:15:45I've got one for you, one for you, one for you.
0:15:45 > 0:15:48- Would you like one? - Yes, please.- There you go.
0:15:48 > 0:15:51'What we've learned is it's a profile'
0:15:51 > 0:15:52of strengths and weaknesses.
0:15:52 > 0:15:55The simple message is learning from listening is difficult,
0:15:55 > 0:15:57we have strengths as visual learners,
0:15:57 > 0:16:01and just applying that has made a big difference.
0:16:01 > 0:16:03Could this be me?
0:16:03 > 0:16:05- Ready?- Yes, go.
0:16:05 > 0:16:07- Elamee...- Elmer...
0:16:07 > 0:16:11"Elmer was yellow and orange and red and pink and purple
0:16:11 > 0:16:14"and blue and green..."
0:16:14 > 0:16:18'According to Sue, nowadays some 80%, that's four-fifths
0:16:18 > 0:16:21'of people with Down's syndrome, could learn to read
0:16:21 > 0:16:23'if taught in the right way, and so with the right support,
0:16:23 > 0:16:26'the majority can go through mainstream schools,
0:16:26 > 0:16:29'get work and live independent, ordinary lives.'
0:16:29 > 0:16:32So, I mean, that leads us on to the question on screening.
0:16:32 > 0:16:36Do you have any view on the national screening programme?
0:16:36 > 0:16:40We don't believe that a diagnosis of Down's syndrome should be
0:16:40 > 0:16:42a reason for termination.
0:16:42 > 0:16:46Nobody's discussed it with adults with Down's syndrome,
0:16:46 > 0:16:48many of whom can now read, understand the issues,
0:16:48 > 0:16:53and realise that as a group there is a large proportion, particularly
0:16:53 > 0:16:57in the medical community, who think their lives aren't worth living.
0:16:57 > 0:17:02But there was never, and has never been, a public, ethical debate.
0:17:02 > 0:17:05I think there definitely ought to be a debate.
0:17:09 > 0:17:12I'm amazed to hear that 30 years ago, the government just decided
0:17:12 > 0:17:16to introduce screening for Down's syndrome with no public discussion.
0:17:19 > 0:17:24It was the very same time that Sue's research was making inclusion possible.
0:17:24 > 0:17:26- Good morning, Olly! - Morning.- How are you?
0:17:26 > 0:17:28- Good.- Nice to see you.
0:17:28 > 0:17:31Since then, it's become commonplace for people with Down's syndrome
0:17:31 > 0:17:33to go to mainstream school.
0:17:35 > 0:17:39But the science of screening has also been developing.
0:17:39 > 0:17:41And some are saying it's at the point of threatening
0:17:41 > 0:17:44the very existence of the Down's syndrome community.
0:17:45 > 0:17:48So what's about to happen with screening?
0:17:48 > 0:17:50Goodness me, I'm so glad you asked, Claire.
0:17:50 > 0:17:55Well, at the moment, if you're an average UK mother,
0:17:55 > 0:17:57let's say you're 30.
0:17:57 > 0:18:01Your baby grows. It becomes a raspberry,
0:18:01 > 0:18:03and then it becomes a grape.
0:18:03 > 0:18:06Now, at about between 11 and 13 weeks, you go for your scan
0:18:06 > 0:18:08and you have some blood tests.
0:18:08 > 0:18:11Now, you're going to recognise this procedure from earlier in the programme.
0:18:13 > 0:18:15This is a pretty good screen,
0:18:15 > 0:18:21it catches 85% of all babies with Down's syndrome,
0:18:21 > 0:18:27but as you can see, the odd Brussels sprout with Down's syndrome can get through.
0:18:27 > 0:18:31The only way of knowing for sure whether or not your baby
0:18:31 > 0:18:34has Down's syndrome is to have an invasive diagnostic test
0:18:34 > 0:18:40which would happen somewhere between pear and grapefruit,
0:18:40 > 0:18:42and so here's one I prepared earlier.
0:18:42 > 0:18:47Amniocentesis is when your doctor would take,
0:18:47 > 0:18:50collect, some of the fluid around the baby in the,
0:18:50 > 0:18:53what you will recognise easily as the amniotic sac.
0:18:53 > 0:18:58Obviously there is always the fear that that little pear in there
0:18:58 > 0:19:00will be harmed.
0:19:00 > 0:19:05But now there has been an amazing scientific breakthrough.
0:19:09 > 0:19:14This sieve represents non-invasive prenatal testing.
0:19:14 > 0:19:18It can tell whether your baby has Down's syndrome with 99% accuracy
0:19:18 > 0:19:20as early as here.
0:19:20 > 0:19:25So what this is going to mean is that more and more women
0:19:25 > 0:19:28are going to know that the baby they are carrying has Down's syndrome
0:19:28 > 0:19:30in pregnancy, and if we remember
0:19:30 > 0:19:34that most women who know for sure terminate, presumably this is
0:19:34 > 0:19:38going to mean far fewer babies with Down's syndrome being born.
0:19:41 > 0:19:44In the UK, this new non-invasive test is being developed
0:19:44 > 0:19:47by Lynne Chitty at Great Ormond Street.
0:19:47 > 0:19:52She's Britain's only professor of genetics and foetal medicine.
0:19:52 > 0:19:56I need to hear her take on the possible consequences of this new test.
0:20:01 > 0:20:03My lines, I'm learning my lines.
0:20:03 > 0:20:07How HAS this new screening test come about, and why?
0:20:07 > 0:20:09I can do better than that.
0:20:09 > 0:20:13HOW has this new screening test come about and WHY?
0:20:13 > 0:20:15No, that's too much.
0:20:18 > 0:20:21How has this new SCREENING test come about AND why?
0:20:21 > 0:20:23That's better.
0:20:23 > 0:20:26'The statistics for termination rates are complicated and disputed
0:20:26 > 0:20:29'by both sides of the debate, but since the new test
0:20:29 > 0:20:32'has been available in the private sector,
0:20:32 > 0:20:35'the Department of Health has reported that termination rates
0:20:35 > 0:20:38'for Down's syndrome have gone up by almost a quarter.
0:20:38 > 0:20:42'Professor Chitty is proposing that this new test be rolled out on the NHS.
0:20:42 > 0:20:47'She's done a study and presented her research to the National Screening Committee
0:20:47 > 0:20:50'who will announce their decision in the next few days.'
0:20:52 > 0:20:54- Hello there.- Hi.- I'm Sally.. - And I'm Lynne Chitty.
0:20:54 > 0:20:57- Nice to meet you. - Hello, very nice to meet you.
0:20:59 > 0:21:01- This is the HiSeq.- Oh, right.
0:21:01 > 0:21:05This is the machine which sequences the DNA.
0:21:05 > 0:21:07We have developed this test ourselves,
0:21:07 > 0:21:09so this is not one of the commercial companies doing it.
0:21:09 > 0:21:13We did that as part of the study to show that it could be done
0:21:13 > 0:21:14in an NHS laboratory,
0:21:14 > 0:21:17that you didn't have to be sent to America or wherever to be tested.
0:21:17 > 0:21:19OK.
0:21:19 > 0:21:22And the accuracy, what is it at the moment,
0:21:22 > 0:21:2397, 98, 99, what's the accuracy?
0:21:23 > 0:21:28It's about 99, it will detect about 99% of all cases.
0:21:30 > 0:21:33'From the outside, to me, it seems like there is'
0:21:33 > 0:21:39no distinction being made between Down's syndrome and a disease.
0:21:39 > 0:21:43Whereas, to me, Down's syndrome is a type of person.
0:21:43 > 0:21:47- So you wouldn't screen out, I don't know...- Can I just stop you there?
0:21:47 > 0:21:50You have just used the word "Screen out",
0:21:50 > 0:21:52I do not think that we are screening out.
0:21:52 > 0:21:55On the contrary, I really do not think
0:21:55 > 0:21:58we are going to be screening out Down's syndrome.
0:21:58 > 0:22:01I find it quite distressing. I had a journalist phone me up and say,
0:22:01 > 0:22:03"You're going to annihilate Down's",
0:22:03 > 0:22:05well, I don't think that's going to happen.
0:22:05 > 0:22:09So, erm... Well, explain to me why that isn't going to happen then.
0:22:09 > 0:22:12Because the figures say the opposite, don't they? At the moment.
0:22:12 > 0:22:15Well, you see, the trouble is, everybody is looking at
0:22:15 > 0:22:19hypothetical scenarios, they are looking at "what-if" situations.
0:22:19 > 0:22:22So one of the reasons why we did our study was because we needed
0:22:22 > 0:22:26to stop the "what-ifs" and actually look at what does happen
0:22:26 > 0:22:28in practice when you give women the option.
0:22:28 > 0:22:31So we found there was a lot of women who are actually using
0:22:31 > 0:22:34the NIPT test to find out whether their baby has got Down's syndrome,
0:22:34 > 0:22:36inform themselves and carry on with the pregnancy.
0:22:36 > 0:22:38If you look at our statistics, small numbers,
0:22:38 > 0:22:41it will not significantly change the live birth rate,
0:22:41 > 0:22:43so I don't think you can say that at the moment,
0:22:43 > 0:22:45you have to wait and see what happens.
0:22:45 > 0:22:47It's quite a high cost if it is...
0:22:47 > 0:22:49It's not a high cost at all,
0:22:49 > 0:22:52we showed very clearly that you can implement this...
0:22:52 > 0:22:55Sorry, I wasn't meaning the financial cost.
0:22:55 > 0:23:02I mean this is an experiment that may result in people choosing
0:23:02 > 0:23:07not to terminate and just choosing to know, OR it may result in
0:23:07 > 0:23:11a catastrophic result on the Down's syndrome population.
0:23:11 > 0:23:14Well, the pilot study would suggest it is not going to result
0:23:14 > 0:23:15in the latter.
0:23:15 > 0:23:18- I think, so you have...? How old is your son?- 11.
0:23:18 > 0:23:20- So he is 11.- Mm.
0:23:20 > 0:23:23How do you feel about...
0:23:25 > 0:23:27..later on in life...?
0:23:27 > 0:23:29Because he is likely to outlive you,
0:23:29 > 0:23:32so what does that prospect hold for you?
0:23:32 > 0:23:34Well, I'm actually...
0:23:34 > 0:23:39I just feel that the answer to that is not termination.
0:23:39 > 0:23:44The answer to that is, if we have a society that is unable
0:23:44 > 0:23:49to care for people, then the problem is not the person.
0:23:54 > 0:23:57She was at enormous pains to say that screening
0:23:57 > 0:24:00wasn't a screening out thing.
0:24:01 > 0:24:04Oh, dear, but it's still really sad, isn't it?
0:24:04 > 0:24:06It's just, you know, it's just horrible.
0:24:06 > 0:24:09The reality that we live in a world where...
0:24:16 > 0:24:19I don't know, I sort of feel like people with Down's syndrome
0:24:19 > 0:24:21are a type of person, it doesn't feel like...
0:24:21 > 0:24:23It's not a disease.
0:24:24 > 0:24:29And the type of person that Olly is - but not just Olly -
0:24:29 > 0:24:35the type of characteristics that these people share are so benign.
0:24:35 > 0:24:38I feel like you read encounters of Western explorers and the dodo,
0:24:38 > 0:24:42where this kind, nice, curious bird comes up
0:24:42 > 0:24:44and then just gets wiped out.
0:24:45 > 0:24:50And, eh, through not being suspicious enough.
0:24:50 > 0:24:52Or violent enough.
0:24:53 > 0:24:55But, yeah, anyway...
0:25:01 > 0:25:04I don't feel particularly reassured about NIPT.
0:25:04 > 0:25:08I'm worried we might be gambling with society's diversity.
0:25:10 > 0:25:14So what happens when almost everyone screens?
0:25:15 > 0:25:18Well, wouldn't you know? There's a place that can tell us.
0:25:21 > 0:25:25What do we know...? The thinking shot.
0:25:25 > 0:25:27What we know about Iceland?
0:25:27 > 0:25:30Well, we know that it has lots of mountains.
0:25:30 > 0:25:32SHE LAUGHS
0:25:32 > 0:25:33And some ice.
0:25:34 > 0:25:38But it also has lots of hot stuff, by which I mean lava.
0:25:40 > 0:25:42It's a land of contradictions.
0:25:42 > 0:25:45Here they provide some of the best care and opportunities
0:25:45 > 0:25:47for disabled people in the world.
0:25:47 > 0:25:49But over the last five years,
0:25:49 > 0:25:52100% of people have chosen to terminate for Down's syndrome.
0:25:54 > 0:25:56100%.
0:25:56 > 0:25:59That's, like, everyone.
0:26:00 > 0:26:04If this is the direction that the UK is heading, then I wonder
0:26:04 > 0:26:05what it must be like to have
0:26:05 > 0:26:08three copies of chromosome 21 and live here.
0:26:38 > 0:26:42Hi. Hi, Halldora, I'm Sally.
0:26:42 > 0:26:44'32-year-old Halldora is one of the few people
0:26:44 > 0:26:46'with Down's syndrome in Iceland.
0:26:46 > 0:26:50'Her story hit the headlines when she wrote an article
0:26:50 > 0:26:51'protesting her right to life.'
0:26:51 > 0:26:54- Would you show us your exhibition? - Yes, of course.
0:26:54 > 0:26:57'It prompted photographer Sigga Ella to take 21 portraits of some of
0:26:57 > 0:27:00'Iceland's remaining people with Down's syndrome.'
0:27:01 > 0:27:03I found Halldora's article online.
0:27:03 > 0:27:07Going through her thoughts, she is basically saying that,
0:27:07 > 0:27:08though she has a disability,
0:27:08 > 0:27:11it doesn't define her as a person, you know?
0:27:12 > 0:27:20How does it feel to know that people
0:27:20 > 0:27:24discuss whether or not...
0:27:24 > 0:27:27Down's syndrome is OK to live with?
0:27:36 > 0:27:38SHE SPEAKS ICELANDIC
0:27:49 > 0:27:53She thought that they were coming after her life.
0:27:55 > 0:27:56You are sighing.
0:27:56 > 0:27:58SHE MIMICS SIGHING DEEPLY
0:27:58 > 0:28:03And whenever I met with the producers to talk about
0:28:03 > 0:28:05this programme, I was doing that sighing.
0:28:07 > 0:28:10I couldn't talk about it for a very long time.
0:28:10 > 0:28:14It's great that you speak out.
0:28:14 > 0:28:18It's great that you...say something.
0:28:19 > 0:28:21(Yes.)
0:28:23 > 0:28:25It isn't always easy.
0:28:25 > 0:28:32We have our ups and downs, and we have worries, but that's life.
0:28:32 > 0:28:33Life IS up and down.
0:28:33 > 0:28:35Aww.
0:28:35 > 0:28:37I've been wanting to hug you the whole time,
0:28:37 > 0:28:39but I thought it was a bit forward.
0:28:39 > 0:28:41Aww. Lovely girl.
0:28:41 > 0:28:43Lovely girl.
0:28:45 > 0:28:48Halldora speaks two languages, she's got a job,
0:28:48 > 0:28:53she's hoping to marry her long-term boyfriend this summer.
0:28:53 > 0:28:57It upsets me that she has to justify her existence.
0:28:57 > 0:28:58Imagine if you had to do that.
0:29:01 > 0:29:04Maybe it's because they're stuck on an island in the middle
0:29:04 > 0:29:08of the Atlantic and there's only 300,000 Icelanders to choose from,
0:29:08 > 0:29:11but they do seem a bit preoccupied with genetics here.
0:29:12 > 0:29:16I've come to a laboratory on the outskirts of Reykjavik.
0:29:16 > 0:29:18No, that's not me, but thank you.
0:29:18 > 0:29:19There I am.
0:29:21 > 0:29:25Somewhere in this building, there's a man called Kari Stefansson,
0:29:25 > 0:29:26who now has enough information
0:29:26 > 0:29:29to predict the genetic code of everybody in Iceland.
0:29:31 > 0:29:33SHE KNOCKS ON DOOR
0:29:33 > 0:29:35Come in.
0:29:36 > 0:29:39- Hi there.- Hello.
0:29:41 > 0:29:44- Nice to meet you.- Nice to meet you. - I'm Sally.- I'm Kari.
0:29:44 > 0:29:48Everyone is interested in this kind of research.
0:29:48 > 0:29:52It is inherent in man to try to figure out as much
0:29:52 > 0:29:54about himself as possible.
0:29:54 > 0:30:00So you can predict a probability of somebody getting good grades
0:30:00 > 0:30:06- in school, of somebody inheriting various diseases?- Yes.
0:30:06 > 0:30:10The only thing this is going to do is lead to knowledge.
0:30:10 > 0:30:14Let's go back a step and say, em, so the reason we're in Iceland
0:30:14 > 0:30:18is because you have a screening programme for Down's syndrome...
0:30:18 > 0:30:22- Mm-hmm.- ..and of the pregnancies that are discovered,
0:30:22 > 0:30:26100% of the identified pregnancies are terminated.
0:30:26 > 0:30:33And, eh, in some people's eyes, that's successful.
0:30:33 > 0:30:37- And in...- I'm not entirely sure that it is successful.
0:30:37 > 0:30:40The statistics is, erm...
0:30:40 > 0:30:42Is earth-shattering, basically.
0:30:42 > 0:30:47I think it is, in many ways, not particularly thoughtful.
0:30:47 > 0:30:50I'll tell you that the guy who manages this building,
0:30:50 > 0:30:56our janitor, who is an absolutely wonderful person,
0:30:56 > 0:30:58he has a son who has Down's syndrome,
0:30:58 > 0:31:01and there is hardly anything more beautiful than seeing
0:31:01 > 0:31:03the two of them together,
0:31:03 > 0:31:07because there is so strong bond and so much love.
0:31:07 > 0:31:11And somehow, in our culture,
0:31:11 > 0:31:16it has become accepted to abort Down's syndrome foetuses.
0:31:16 > 0:31:20Which, I think, is pretty merciless, in many ways.
0:31:20 > 0:31:22I'm not entirely sure it's correct.
0:31:23 > 0:31:27The only correct thing about it is I believe the woman should be
0:31:27 > 0:31:31the individual to decide whether she wants to terminate pregnancy or not.
0:31:31 > 0:31:33Do you agree with that?
0:31:33 > 0:31:37I agree with that, I love that you think that.
0:31:37 > 0:31:40- Anything else is illogical.- Yeah.
0:31:41 > 0:31:43Yeah.
0:31:43 > 0:31:47- CHUCKLING:- You're very serious about this.
0:31:47 > 0:31:52- Yeah, is that bad?- No, that's good, I actually like that.
0:31:52 > 0:31:57This is one of the ways in which you are trying to take responsibility.
0:32:00 > 0:32:03Iceland's certainly got me thinking.
0:32:03 > 0:32:05Why is Down's syndrome the disability
0:32:05 > 0:32:07it's socially acceptable to terminate?
0:32:07 > 0:32:10And how do we come back from that?
0:32:10 > 0:32:12I've landed back in the UK to the news
0:32:12 > 0:32:14that the National Screening Committee
0:32:14 > 0:32:16have made their recommendations.
0:32:18 > 0:32:24"The most exciting development in pregnancy care for decades."
0:32:24 > 0:32:27"Win on Down's testing." A win...
0:32:27 > 0:32:30"A win", say The Sun.
0:32:30 > 0:32:32"..are winning.
0:32:32 > 0:32:35"Mums-to-be are to be offered a test for Down's syndrome
0:32:35 > 0:32:37"on the NHS after Great Ormond Street Hospital published results
0:32:37 > 0:32:40"showing the test was safe and 99% accurate.
0:32:40 > 0:32:42"Lyn Chitty...", bla bla bla.
0:32:45 > 0:32:49Reading these reports, there's no mention of the impact
0:32:49 > 0:32:53these tests could have on the Down's community at all.
0:32:53 > 0:32:57I feel like, just as in Iceland, we're somehow being forgotten about.
0:32:59 > 0:33:03Looking at the responses of mums to the news,
0:33:03 > 0:33:07lots of people really upset, crying.
0:33:09 > 0:33:12I've never been a very angry person, but I'm feeling quite angry.
0:33:12 > 0:33:18Like, on a scale of one to ten... I'm nine.
0:33:18 > 0:33:22And when I hit ten, there's a really good chance I'll go green,
0:33:22 > 0:33:24start smashing things up.
0:33:29 > 0:33:33The new non-invasive prenatal test was announced to be
0:33:33 > 0:33:35rolled out last week.
0:33:35 > 0:33:39Lorded by clumsy media as a great step towards
0:33:39 > 0:33:42eradicating this "debilitating condition".
0:33:42 > 0:33:49We must attend, more importantly than ever, to our use of language.
0:33:52 > 0:33:55With the decision on NIPT made,
0:33:55 > 0:33:59I've come to hear a woman who's been invited to talk to the NHS directly.
0:33:59 > 0:34:03Hi, Hayley, nice to meet you. Hi, Natty.
0:34:04 > 0:34:08'Hayley Goleniowska has heard hundreds of stories about how
0:34:08 > 0:34:09'Down's diagnoses are delivered
0:34:09 > 0:34:12'through her blog, called Downs Side Up.
0:34:12 > 0:34:16'She started writing it to share her positive experiences
0:34:16 > 0:34:18'of living with her daughter Natty.'
0:34:18 > 0:34:19Post it.
0:34:19 > 0:34:21SHE QUACKS
0:34:21 > 0:34:23That's so hilarious.
0:34:23 > 0:34:25SALLY LAUGHS
0:34:25 > 0:34:27Thank you.
0:34:27 > 0:34:29You know, we didn't have an antenatal diagnosis,
0:34:29 > 0:34:33but I know how fearful of Down's syndrome I was when I was pregnant,
0:34:33 > 0:34:36and if I had trusted the medical professionals,
0:34:36 > 0:34:40I really don't know what I would have done.
0:34:40 > 0:34:43I don't know if I'd be sitting here today.
0:34:43 > 0:34:48Your words count, and the thoughts and beliefs behind them count too.
0:34:48 > 0:34:52As NIPT means that more women will receive a Down's diagnosis,
0:34:52 > 0:34:54Hayley feels there's now a pressing need
0:34:54 > 0:34:57for that news to be better delivered.
0:34:57 > 0:35:00The following are direct quotes.
0:35:00 > 0:35:02To other families, not to us.
0:35:03 > 0:35:06"I can book you in for a termination in the morning."
0:35:06 > 0:35:09"I can't treat you if you continue with this pregnancy."
0:35:09 > 0:35:13"She's really cute, but you don't want another one like that, do you?"
0:35:15 > 0:35:18Our youngest daughter Natalia was born on our bathroom floor.
0:35:19 > 0:35:24What followed is etched in my heart and frozen in time forever.
0:35:24 > 0:35:27The look of panic on the midwife's face.
0:35:27 > 0:35:31My brain dared not formulate a question, because I was
0:35:31 > 0:35:35terrified of hearing what I thought was my worst nightmare.
0:35:37 > 0:35:39What I had been conditioned to fear.
0:35:41 > 0:35:43SHE SIGHS
0:35:45 > 0:35:51Our community midwife wept. And there was no need to be sorry.
0:35:58 > 0:36:03Natty was not a risk. She's not like a fire or a flood.
0:36:04 > 0:36:07She certainly was NOT a page in a medical journal.
0:36:09 > 0:36:14- TEARFUL:- How I wish I could go back and relive that day,
0:36:14 > 0:36:16knowing what I now know.
0:36:18 > 0:36:19Thank you.
0:36:19 > 0:36:21APPLAUSE
0:36:31 > 0:36:33Well, that certainly had an impact.
0:36:33 > 0:36:38Hayley had the entire room of nurses and midwives in tears.
0:36:38 > 0:36:44And me. It took me back to when Olly was born. My nurse cried too.
0:36:48 > 0:36:50That's very beautiful.
0:36:58 > 0:37:02It wasn't until ten days after Olly was born that we got our diagnosis.
0:37:02 > 0:37:05- Olly?- Yes.
0:37:05 > 0:37:08I love being your mummy.
0:37:08 > 0:37:11But I've spoken to other mothers, and whenever it happens,
0:37:11 > 0:37:15before or after birth, the feeling of shock is pretty universal.
0:37:15 > 0:37:17What Hayley has made me realise is,
0:37:17 > 0:37:21it's such a sensitive time too, how that news is delivered to you,
0:37:21 > 0:37:24and crucially, what information is given,
0:37:24 > 0:37:26must have a bearing on what women decide to do next.
0:37:33 > 0:37:35PHONE RINGS
0:37:35 > 0:37:38Antenatal Results and Choices, can I help you?
0:37:39 > 0:37:42Jane Fisher runs the only counselling charity
0:37:42 > 0:37:44the NHS currently point pregnant women towards
0:37:44 > 0:37:47when they get a Down's diagnosis.
0:37:49 > 0:37:51They are likely to be fielding more and more calls
0:37:51 > 0:37:54as the new test is rolled out.
0:37:55 > 0:38:02How educated are your helpline counsellors about Down's syndrome?
0:38:02 > 0:38:04I wouldn't pretend for a moment - we've got
0:38:04 > 0:38:08a small helpline team of four of us - and I wouldn't ever pretend,
0:38:08 > 0:38:11and we wouldn't pretend, that we are absolutely up to date with
0:38:11 > 0:38:14what living with Down's syndrome means in all its aspects.
0:38:14 > 0:38:17So let's say to you, "I'm worried about how the learning disability
0:38:17 > 0:38:22"is going to affect this baby", what do you then say to me?
0:38:22 > 0:38:24Well, we're not going to say, "You'll be able to cope",
0:38:24 > 0:38:26we'll say, "How worried are you?
0:38:26 > 0:38:30"Do you feel you could continue the pregnancy and deal with that?
0:38:30 > 0:38:33"Can you deal with that level of uncertainty,
0:38:33 > 0:38:36"or do you feel you need to end...?"
0:38:36 > 0:38:39There's a gap there in the logic, isn't there?
0:38:39 > 0:38:43So if I say, "I'm worried about the learning difficulty",
0:38:43 > 0:38:45you go straight to termination from that.
0:38:45 > 0:38:48Whereas, I'm saying I'm worried about the learning difficulty.
0:38:48 > 0:38:50You're putting your cards on the table, Sally,
0:38:50 > 0:38:51which is absolutely right,
0:38:51 > 0:38:55in that we appreciate that people who have children
0:38:55 > 0:38:59with disabilities or are advocates for people with disabilities
0:38:59 > 0:39:02really struggle with prenatal diagnosis
0:39:02 > 0:39:04and decisions to terminate.
0:39:04 > 0:39:08In Iceland, there is now 100% termination,
0:39:08 > 0:39:11so that suggests to me that the information being given out -
0:39:11 > 0:39:14which is partly why is interesting to come and see you -
0:39:14 > 0:39:20- the information being given out is not reflective of...- OK.
0:39:20 > 0:39:24..how it is to be a person with Down's syndrome.
0:39:24 > 0:39:27But we are not directive, Sally, we are not pushing people
0:39:27 > 0:39:30in directions, we're hearing from them, where they are.
0:39:30 > 0:39:35I guess our angle is it's about choice.
0:39:35 > 0:39:41And when... And I have, I would say in my 14 years at ARC,
0:39:41 > 0:39:44I have spoken to hundreds of women who have made the decision
0:39:44 > 0:39:46to end the pregnancy for Down's syndrome.
0:39:46 > 0:39:51And none of those women make the decision lightly.
0:39:51 > 0:39:54What they worry about is they can't know exactly how their child
0:39:54 > 0:39:55is going to be affected.
0:39:56 > 0:40:01They can't know exactly the level of learning disability
0:40:01 > 0:40:05or potential associated health issues.
0:40:05 > 0:40:08They feel they can't manage that in their lives,
0:40:08 > 0:40:10or don't want to manage that in their lives,
0:40:10 > 0:40:12I think that will always be with us.
0:40:15 > 0:40:19Having spoken to Jane, I feel I really need to talk to a woman
0:40:19 > 0:40:22who has made the decision to have a termination herself.
0:40:26 > 0:40:29- Hi, nice to meet you. - Hi, I'm Sally.- Come in.
0:40:29 > 0:40:31'Kate is now pregnant again.
0:40:31 > 0:40:34'I'm intrigued to find out what she knew about Down's syndrome
0:40:34 > 0:40:37'when she made her decision.'
0:40:37 > 0:40:39- Where shall we sit? - Let's go on the couch.
0:40:39 > 0:40:43You've just got to do what you feel is right, haven't you?
0:40:43 > 0:40:46By going down the termination route,
0:40:46 > 0:40:49we felt that that was the best thing for the baby.
0:40:49 > 0:40:55- I was 25 weeks when I delivered Max. - How does it work with a termination?
0:40:55 > 0:40:57You say you take a pill?
0:40:57 > 0:41:02Yeah, so you take a tablet that starts to break down placenta,
0:41:02 > 0:41:07and then I had an injection to stop his heart, so it's instant.
0:41:07 > 0:41:10One minute, you could feel him wriggling around
0:41:10 > 0:41:14and then the next second, he's gone. Erm...
0:41:14 > 0:41:16Sorry.
0:41:21 > 0:41:23Got me too! Got me too.
0:41:23 > 0:41:25It's not an easy subject to discuss,
0:41:25 > 0:41:29goodness me, you're incredibly brave to discuss it.
0:41:29 > 0:41:32- And do you feel that you had an informed choice about this?- Yeah.
0:41:32 > 0:41:34You had as much information as you needed?
0:41:34 > 0:41:36Yeah, rather than the clinical research
0:41:36 > 0:41:39and a doctor saying, "This is what it will look like",
0:41:39 > 0:41:43what I was more interested in was family stories, so we looked
0:41:43 > 0:41:46at clips on YouTube and I read news articles and things like that,
0:41:46 > 0:41:49blogs by mums and stuff, so you kind of see
0:41:49 > 0:41:52some of the difficulties people are going through.
0:41:52 > 0:41:54There was one woman,
0:41:54 > 0:41:58her five-year-old's still not walking and he's very heavy,
0:41:58 > 0:42:04and she's having to deal with him having fits everywhere.
0:42:04 > 0:42:09If my child was affected as much as he was,
0:42:09 > 0:42:13I would feel really guilty about that, having been given the choice.
0:42:13 > 0:42:18There were only very few stories at that level.
0:42:18 > 0:42:21There was loads of positive stuff out there,
0:42:21 > 0:42:25and it was the positive stuff that really threw me.
0:42:27 > 0:42:30MUSIC PLAYS IN CLIP
0:42:30 > 0:42:32'Chelsea has won several titles, including winning
0:42:32 > 0:42:36'the Special Olympics National Championship title four times,
0:42:36 > 0:42:41'and the International Down's Syndrome World Championships title.
0:42:41 > 0:42:44'Chelsea started practising 16 hours a week.'
0:42:44 > 0:42:47'I think she just puts in that much more work
0:42:47 > 0:42:48'to get where she needs to be.'
0:42:48 > 0:42:51I am unbroken.
0:42:54 > 0:42:59- I wonder if we have very different reactions to that.- Probably.- Yeah.
0:42:59 > 0:43:01You think that's...?
0:43:01 > 0:43:05It's very inspirational, and she should be so proud of herself,
0:43:05 > 0:43:08and she's worked very hard to get there, but it was that that kind of
0:43:08 > 0:43:13made me realise how much harder they have to work to reach their goals.
0:43:13 > 0:43:15That's not what I want for my son.
0:43:15 > 0:43:20Even the best-case scenario isn't potentially what I want for my son.
0:43:20 > 0:43:24And, you know, I just...
0:43:24 > 0:43:27- I don't...- Do you mind if I ask you the really difficult question?
0:43:27 > 0:43:31- Go on.- So you think her life would have been better not happening?
0:43:32 > 0:43:33No, not at all.
0:43:33 > 0:43:36I believe it's every parent's choice
0:43:36 > 0:43:38to decide what's right for their child.
0:43:38 > 0:43:39I don't believe it's wrong
0:43:39 > 0:43:42to bring Down's syndrome children into the world.
0:43:42 > 0:43:44She's got a great quality of life, she's loving life,
0:43:44 > 0:43:47- she's at the top of her game... - Yeah.
0:43:47 > 0:43:49No, I don't believe that's wrong at all,
0:43:49 > 0:43:52it's just not what I would want for my child.
0:43:55 > 0:43:58'She's a reasonable woman, and she's right...'
0:44:00 > 0:44:03She's right that the choice is hers.
0:44:05 > 0:44:08Em, she's right that the choice is hers,
0:44:08 > 0:44:13she's right that opportunities for people with Down's syndrome
0:44:13 > 0:44:16are limited, she's right that bringing up a child
0:44:16 > 0:44:20with Down's syndrome requires more effort and more engagement.
0:44:20 > 0:44:23Erm...
0:44:23 > 0:44:29But I think she's wrong that an increase in choice
0:44:29 > 0:44:34means greater happiness. Cos I don't think it does.
0:44:34 > 0:44:37And I think if you want a happy child, you can guarantee
0:44:37 > 0:44:41you're having a child that's predisposed to happiness.
0:44:43 > 0:44:45So, anyway, what I'm saying to you, Clare,
0:44:45 > 0:44:49is that I found that much harder than I was anticipating.
0:44:49 > 0:44:53And, eh, yeah, I'd like to go home now!
0:44:58 > 0:45:01'Kate didn't want a child like mine.
0:45:01 > 0:45:03'That was difficult for me to hear.
0:45:06 > 0:45:10'The thing I seem to be coming up against is this idea of choice.
0:45:13 > 0:45:16'I chose to screen with all three of my children.
0:45:16 > 0:45:20'With Olly, I was given a one in 10,000 chance of him having Down's.
0:45:23 > 0:45:26'But back then, if you'd asked me whether I could cope
0:45:26 > 0:45:28'with a child with a disability,
0:45:28 > 0:45:31'I'm not sure whether I would have said yes.
0:45:32 > 0:45:35'Now I'd say that having him in my life has changed me
0:45:35 > 0:45:37'and my family for the better.
0:45:39 > 0:45:42'And that makes me question whether choice is always
0:45:42 > 0:45:44'the wonderful thing it's cracked up to be.
0:45:50 > 0:45:53'It leaves me wondering - where are all these individual choices
0:45:53 > 0:45:54'going to take us?
0:45:56 > 0:45:59'What kind of world will Olly be living in when he's my age?'
0:46:13 > 0:46:16From what I understand, the new Down's test, NIPT,
0:46:16 > 0:46:21is just one small corner in a huge new field of genetics.
0:46:21 > 0:46:24So to find out where exactly the science of screening is up to,
0:46:24 > 0:46:27I've come to the world's biotech hub -
0:46:27 > 0:46:28California.
0:46:29 > 0:46:34The double helix. They really love DNA here.
0:46:34 > 0:46:36Just as in Iceland,
0:46:36 > 0:46:40it turns out things here are moving much faster than I realised.
0:46:43 > 0:46:45Come and have a look at what it's called.
0:46:45 > 0:46:48"It Can Happen NOW...TO YOU!"
0:46:48 > 0:46:49To you.
0:46:49 > 0:46:52That could not be more appropriate, because here,
0:46:52 > 0:46:56in what I thought was the future but is apparently the present,
0:46:56 > 0:46:59we can screen for tons of other things already,
0:46:59 > 0:47:03so what's happening to the Down's syndrome community
0:47:03 > 0:47:04could happen to you if you have
0:47:04 > 0:47:06a history of Alzheimer's in your family,
0:47:06 > 0:47:08if you have a history of depression in your family,
0:47:08 > 0:47:11if you have a history of obesity or diabetes in your family.
0:47:11 > 0:47:13It won't be long before we'll be
0:47:13 > 0:47:16able to prenatally screen out people like you.
0:47:18 > 0:47:21Oh. A-And me.
0:47:22 > 0:47:23Both of us.
0:47:23 > 0:47:25SHE LAUGHS
0:47:25 > 0:47:29I'm going to meet a scientist called Razib Khan.
0:47:29 > 0:47:33He's the first person in the world to sequence an unborn child's DNA.
0:47:36 > 0:47:38Yep. SHE LAUGHS
0:47:38 > 0:47:40Smooth operator.
0:47:41 > 0:47:44'Don't worry, it was his son's.'
0:47:44 > 0:47:47- Hey there, Razib, how you doing? I'm Sally.- Nice to meet you.
0:47:47 > 0:47:49Nice to meet you too.
0:47:49 > 0:47:52'With his unborn child's complete genetic code to hand, Razib was
0:47:52 > 0:47:55'able to screen not only for Down's syndrome,
0:47:55 > 0:47:57'but for anything he liked.'
0:47:57 > 0:47:59It was a controversial...
0:47:59 > 0:48:01Tell me what happened, did you get hauled in?
0:48:01 > 0:48:05No, but there was, like, a big controversy in the media,
0:48:05 > 0:48:08the university and a lot of people. I'll give you, like...
0:48:08 > 0:48:10But you must have known that was going to happen.
0:48:10 > 0:48:12No, we weren't totally sure.
0:48:12 > 0:48:15You have to understand, I know for a fact that within ten years
0:48:15 > 0:48:17most people are going to be doing this,
0:48:17 > 0:48:20so it might be scary right now, but this is just the future,
0:48:20 > 0:48:22I just brought it forward into your face a little.
0:48:22 > 0:48:24I mean, this is like a really extreme version of not being
0:48:24 > 0:48:26- able to wait till Christmas, right?- Yes.
0:48:26 > 0:48:28APPROACHING FOOTSTEPS
0:48:28 > 0:48:31- Speak of the devil.- Hello. Hello!
0:48:31 > 0:48:36Wow, how nice to meet you. Hiya. He's absolutely gorgeous.
0:48:36 > 0:48:40- Congratulations. You're gorgeous. - It's in the genetics.
0:48:40 > 0:48:44- So what kind of child were you hoping for?- The one I got.
0:48:44 > 0:48:50- But what was your win child? - Healthy.- Healthy?- Yeah.
0:48:50 > 0:48:53How low down the scale do we go before it becomes an issue?
0:48:53 > 0:48:55If they have like a mental or developmental disability,
0:48:55 > 0:48:57that was severe...
0:48:57 > 0:48:59How about schizophrenia, something like that?
0:48:59 > 0:49:03- Mm.- Or autism.- I mean, it depends on the severity of these issues.
0:49:03 > 0:49:06- You can't tell then?- Not right now.
0:49:06 > 0:49:10- Let's say you had discovered Huntington's...- Yeah.
0:49:10 > 0:49:12Presumably you had this information early.
0:49:12 > 0:49:16Yeah, we would have terminated.
0:49:16 > 0:49:17So, I don't know if they told you,
0:49:17 > 0:49:20I'm a parent of a child with Down's syndrome.
0:49:20 > 0:49:23- Down's syndrome is presented as the very worst-case scenario.- OK.
0:49:23 > 0:49:27- My lived experience is, there's no relation to that.- OK.
0:49:27 > 0:49:31So the whole basis of this discussion is a bit dodgy.
0:49:31 > 0:49:32Yeah, but that's your opinion.
0:49:32 > 0:49:35Other people can have other different opinions,
0:49:35 > 0:49:37people can make their own choices. No-one, hopefully,
0:49:37 > 0:49:41- is being forced into making any decision they don't want, right?- Mm.
0:49:41 > 0:49:45I mean, do you think we're going to look at people eliminating,
0:49:45 > 0:49:49- ending pregnancies... - Yeah, some people will do that.
0:49:49 > 0:49:51Some of it, obviously, seems pernicious to me,
0:49:51 > 0:49:54but that's just my opinion as well.
0:49:54 > 0:49:56Science has no morality,
0:49:56 > 0:50:00science just tells you. You can do what you want with the science.
0:50:02 > 0:50:06Razib analysed his son's genome using his laptop at home
0:50:06 > 0:50:08two years ago.
0:50:08 > 0:50:11He had to leave it processing the data for two weeks solid.
0:50:14 > 0:50:19But even since then, DNA sequencing has become far more accessible.
0:50:19 > 0:50:22In America, there are already companies who will do it
0:50:22 > 0:50:25for you for under 1,000.
0:50:26 > 0:50:30The scientist arguably at the forefront of this revolution
0:50:30 > 0:50:32is George Church.
0:50:33 > 0:50:37He pioneered the method used to sequence the first human genome,
0:50:37 > 0:50:39and over his 40-year career
0:50:39 > 0:50:42has become known as the Godfather of Genetics.
0:50:44 > 0:50:48I might leave my toy microscope that I bought for my child in the car,
0:50:48 > 0:50:52cos that might look like I'm not a serious...
0:50:52 > 0:50:54LAUGHING: Not a serious person.
0:50:56 > 0:50:59I've come to Harvard Medical School in Boston to meet him.
0:50:59 > 0:51:03Maybe he can tell me whether science does - or should have -
0:51:03 > 0:51:04any morality.
0:51:05 > 0:51:08You know we're making this film about Down's syndrome
0:51:08 > 0:51:10- and prenatal screening programme. - Yes.
0:51:10 > 0:51:13It seems that there's going to be many, many more things we're
0:51:13 > 0:51:16- going to be able to screen for in the very near future.- Mm-hmm.
0:51:16 > 0:51:20So I don't know how, the genie's out of the bottle, I don't know
0:51:20 > 0:51:25how one even begins to create ethics around this kind of thing.
0:51:25 > 0:51:29Yeah. Well, ethics changes from year to year.
0:51:29 > 0:51:33I'm sure that if you had talked about the one million people
0:51:33 > 0:51:37that die in cars a year back at the turn of the century,
0:51:37 > 0:51:39we might not have cars now.
0:51:39 > 0:51:42- Mm.- Because that would be an unacceptable outcome.
0:51:42 > 0:51:45With Down's syndrome, I don't think it's so much
0:51:45 > 0:51:50a genie being out of the bag, as much as parents exert
0:51:50 > 0:51:53their will, and that depends on what they see on television...
0:51:53 > 0:51:56In other words, if they see lots of happy families
0:51:56 > 0:52:00with Down's syndrome kids, then they might say, "Hey, I want that."
0:52:02 > 0:52:05But I think that, if anything, it goes the opposite direction.
0:52:05 > 0:52:09People will not only choose the way their child will be,
0:52:09 > 0:52:12but when the child grows up, the child will change themselves.
0:52:12 > 0:52:15Genetically. And it's unlikely a child will say,
0:52:15 > 0:52:19"Hey, I'd like to be a Down's syndrome kid."
0:52:19 > 0:52:21What do you think the future holds for us?
0:52:21 > 0:52:25It's all about education. It's not the technology that's the problem.
0:52:25 > 0:52:27- No.- It's the societal pressures
0:52:27 > 0:52:31- and market forces that are at work.- Yes.
0:52:31 > 0:52:33If you want to instil certain values,
0:52:33 > 0:52:37spread the word that these are actually valuable members
0:52:37 > 0:52:40of society, valuable in a very broad sense.
0:52:44 > 0:52:50I'm here today not only to make a case for Down's syndrome,
0:52:50 > 0:52:55but to spread the idea that all lives matter.
0:52:55 > 0:52:58CHEERING AND APPLAUSE
0:52:58 > 0:53:01Actually, I've made contact with a person who's already been
0:53:01 > 0:53:05telling the world just how valuable life with Down's syndrome is.
0:53:06 > 0:53:11It is not a disease. You can't catch it from anyone.
0:53:11 > 0:53:13It is just something that happens.
0:53:13 > 0:53:16Her name is Karen Gaffney, and she's the world's
0:53:16 > 0:53:19best-known advocate for people with Down's syndrome.
0:53:19 > 0:53:23But with the Godfather of Genetics' words ringing in my ears...
0:53:23 > 0:53:25Oh, no, I'm crying again.
0:53:25 > 0:53:29There's just more riding on this meeting than I thought.
0:53:29 > 0:53:32It feels like even if this particular encounter
0:53:32 > 0:53:36isn't life and death, life and death is hanging around in the air.
0:53:36 > 0:53:40You know, maybe there will be someone who...
0:53:40 > 0:53:43watches this programme who decides to have
0:53:43 > 0:53:45a baby they wouldn't otherwise have had,
0:53:45 > 0:53:48or maybe there will be someone who watches this programme
0:53:48 > 0:53:51who might have had a baby, and decides they won't.
0:53:51 > 0:53:55It all just... I've got an overactive imagination, basically.
0:53:56 > 0:53:57SHE SIGHS
0:53:57 > 0:54:00Karen and her mum Barbara have agreed to meet me
0:54:00 > 0:54:01before I leave Boston.
0:54:02 > 0:54:05Hi! Sorry, I'm staring out the window. Hi there.
0:54:05 > 0:54:08- Nice to meet you, I'm Sally.- Hi, Sally, I'm Barb.
0:54:08 > 0:54:11Hi, Barb. Hi. How are you, Karen?
0:54:11 > 0:54:13How's your son Olly doing?
0:54:13 > 0:54:16Oh, thank you, he's doing all right.
0:54:16 > 0:54:17You've swum the Channel.
0:54:17 > 0:54:19- Yes, I have. - That must have been horrible.
0:54:19 > 0:54:21- THEY LAUGH - Yeah.
0:54:22 > 0:54:27- And have you had a good response from that TED talk?- I have, yeah.
0:54:27 > 0:54:31I can't see how anyone could watch it and keep
0:54:31 > 0:54:33very bigoted ideas of Down's syndrome,
0:54:33 > 0:54:35you have done such an amazing job.
0:54:35 > 0:54:38- I think she was able to... - Change minds.
0:54:38 > 0:54:41..change minds and change hearts,
0:54:41 > 0:54:43and just at least get people to question.
0:54:43 > 0:54:46Yeah.
0:54:46 > 0:54:49When did you realise you had Down's syndrome?
0:54:49 > 0:54:51Do you remember what age you were?
0:54:51 > 0:54:56I was between six and seven when my mom told me I had Down's syndrome,
0:54:56 > 0:55:00and how it takes me longer to learn things than it does other people.
0:55:00 > 0:55:05Cos I wasn't quite sure whether to tell Olly or not,
0:55:05 > 0:55:09whether to tell his brothers, and I started off thinking,
0:55:09 > 0:55:15"Well, I just want it to be normal, so we'll tell them."
0:55:15 > 0:55:19And my husband said recently to the youngest, who's four,
0:55:19 > 0:55:21"Olly just finds it difficult to
0:55:21 > 0:55:24"understand sometimes and he gets angry."
0:55:24 > 0:55:26And the little one said, "Like you, Dad?"
0:55:26 > 0:55:28THEY LAUGH
0:55:28 > 0:55:29That's great.
0:55:29 > 0:55:32And it's like, "Yeah, we all find it difficult to understand
0:55:32 > 0:55:34"sometimes and we all get angry sometimes."
0:55:34 > 0:55:37And this is what humanity is all about,
0:55:37 > 0:55:39they're blended into the fabric.
0:55:39 > 0:55:44They're all part of the fabric of humanity, not separate,
0:55:44 > 0:55:47and I think that's what we need to see.
0:55:50 > 0:55:52I think Barbara is dead right.
0:55:52 > 0:55:55Of course, not everyone with Down's syndrome is as high-achieving
0:55:55 > 0:55:57as her daughter, but they're all people,
0:55:57 > 0:56:00they're all part of the fabric of humanity.
0:56:00 > 0:56:03The thing to do now is to show that.
0:56:03 > 0:56:07And that is why I have decided, in my immense wisdom,
0:56:07 > 0:56:10that we should put on a Down's syndrome flash mob
0:56:10 > 0:56:12in central London.
0:56:12 > 0:56:14LAUGHING: Yep.
0:56:14 > 0:56:15What could possibly go wrong?
0:56:17 > 0:56:23"Anyone free next Saturday and able to dance?
0:56:24 > 0:56:31"Actually, dancing ability not...
0:56:31 > 0:56:33"crucial."
0:56:33 > 0:56:34SHE LAUGHS
0:56:35 > 0:56:37- Hi.- You came!
0:56:38 > 0:56:40Thanks so much for coming.
0:56:42 > 0:56:45I'm terrible at it, I'm going to be much worse than all of you guys.
0:56:49 > 0:56:52MUSIC: I Like To Move It by Reel 2 Reel
0:57:31 > 0:57:35So there we go, it's the end. You made it.
0:57:35 > 0:57:38I promised you some interpretive dance, didn't I?
0:57:40 > 0:57:42If we're heading towards a world where we choose
0:57:42 > 0:57:44more and more who gets born,
0:57:44 > 0:57:48I feel like we really need to think about what it is that we value.
0:57:50 > 0:57:53And as our powers of choice get greater and greater,
0:57:53 > 0:57:56who are those people that society might leave behind?
0:57:57 > 0:58:01There's great value in things not being perfect.
0:58:01 > 0:58:04There's a crack in everything, that's how the light gets in,
0:58:04 > 0:58:09and the imperfections are where humanity is most visible.
0:58:11 > 0:58:13DANCERS CHEER
0:58:15 > 0:58:17I guess I'll leave you with that thought.
0:58:17 > 0:58:19Something to chew on anyway.
0:58:21 > 0:58:24- I love you, Mum.- I love you too. I love you so much.
0:58:25 > 0:58:28One, two, three.
0:58:28 > 0:58:30- ALL:- Cheese!