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Number of Down Syndrome babies are decreasing in the world wise

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Number of Down Syndrome babies are decreasing in the world wise

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The percentage of women who terminate babies with Down Syndrome after they hear the results of prenatal screening test.

Ice Land - Almost 100% women (2017)
The United States - 67% (2011)
France - 77% (2015)
Denmark - 98% (2015)

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"CBSN: On Assignment" airs Mondays at 10 p.m. ET/PT on CBS and on our streaming network, CBSN. Explore more on this topic in our "Behind the Lens" report.
With the rise of prenatal screening tests across Europe and the United States, the number of babies born with Down syndrome has significantly decreased, but few countries have come as close to eradicating Down syndrome births as Iceland.

Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women -- close to 100 percent -- who received a positive test for Down syndrome terminated their pregnancy.

While the tests are optional, the government states that all expectant mothers must be informed about availability of screening tests, which reveal the likelihood of a child being born with Down syndrome. Around 80 to 85 percent of pregnant women choose to take the prenatal screening test, according to Landspitali University Hospital in Reykjavik.

"CBSN: On Assignment" headed to Iceland with CBS News correspondent Elaine Quijano to investigate what's factoring into the high termination rates.

Using an ultrasound, blood test and the mother's age, the test, called the Combination Test, determines whether the fetus will have a chromosome abnormality, the most common of which results in Down syndrome. Children born with this genetic disorder have distinctive facial issues and a range of developmental issues. Many people born with Down syndrome can live full, healthy lives, with an average lifespan of around 60 years.

Other countries aren't lagging too far behind in Down syndrome termination rates. According to the most recent data available, the United States has an estimated termination rate for Down syndrome of 67 percent (1995-2011); in France it's 77 percent (2015); and Denmark, 98 percent (2015). The law in Iceland permits abortion after 16 weeks if the fetus has a deformity -- and Down syndrome is included in this category.

With a population of around 330,000, Iceland has on average just one or two children born with Down syndrome per year, sometimes after their parents received inaccurate test results. (In the U.S., according to the National Down Syndrome Society, about 6,000 babies with Down syndrome are born each year.)

"Babies with Down syndrome are still being born in Iceland," said Hulda Hjartardottir, head of the Prenatal Diagnosis Unit at Landspitali University Hospital, where around 70 percent of Icelandic children are born. "Some of them were low risk in our screening test, so we didn't find them in our screening."

When Thordis Ingadottir was pregnant with her third child at the age of 40, she took the screening test. The results showed her chances of having a child with Down syndrome were very slim, odds of 1 in 1,600. However, the screening test is only 85 percent accurate. That year, 2009, three babies were born with Down syndrome in Iceland, including Ingadottir's daughter Agusta, who is now 7.

According to Ingadottir, three babies born with Down syndrome is "quite more than usual. Normally there are two, in the last few years." Since the birth of her daughter, Ingadottir has become an activist for the rights of people with Down syndrome.

As Agusta grows up, "I will hope that she will be fully integrated on her own terms in this society. That's my dream," Ingadottir said. "Isn't that the basic needs of life? What kind of society do you want to live in?"

Geneticist Kari Stefansson is the founder of deCODE Genetics, a company that has studied nearly the entire Icelandic population's genomes. He has a unique perspective on the advancement of medical technology. "My understanding is that we have basically eradicated, almost, Down syndrome from our society -- that there is hardly ever a child with Down syndrome in Iceland anymore," he said.

Quijano asked Stefansson, "What does the 100 percent termination rate, you think, reflect about Icelandic society?"

"It reflects a relatively heavy-handed genetic counseling," he said. "And I don't think that heavy-handed genetic counseling is desirable. ... You're having impact on decisions that are not medical, in a way."

Stefansson noted, "I don't think there's anything wrong with aspiring to have healthy children, but how far we should go in seeking those goals is a fairly complicated decision."

According to Hjartardottir, "We try to do as neutral counseling as possible, but some people would say that just offering the test is pointing you towards a certain direction." Indeed, more than 4 out of 5 pregnant women in Iceland opt for the prenatal screening test.

For expectant mother Bergthori Einarsdottir, who chose to have the test, knowing that most women did so helped steer her decision. "It was not pressure, but they told me that most women did it," she said. "It did affect me maybe a little bit."

Over at Landspitali University Hospital, Helga Sol Olafsdottir counsels women who have a pregnancy with a chromosomal abnormality. They speak to her when deciding whether to continue or end their pregnancies. Olafsdottir tells women who are wrestling with the decision or feelings of guilt: "This is your life - you have the right to choose how your life will look like."

She showed Quijano a prayer card inscribed with the date and tiny footprints of a fetus that was terminated.

Quijano noted, "In America, I think some people would be confused about people calling this 'our child,' saying a prayer or saying goodbye or having a priest come in -- because to them abortion is murder."

More from CBS News

Olafsdottir responded, "We don't look at abortion as a murder. We look at it as a thing that we ended. We ended a possible life that may have had a huge complication... preventing suffering for the child and for the family. And I think that is more right than seeing it as a murder -- that's so black and white. Life isn't black and white. Life is grey."

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"What kind of society do you want to live in?": Inside the country where Down syndrome is disappearing

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Iceland has almost eliminated Down syndrome by aborting virtually 100 percent of fetuses that test positive.

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From 1980 through 2013, the number of terminating Down Syndrome babies are increased significantly.
West Australia - 93%

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There are 90% of people who ends the pregnancy if the baby is down syndrome.

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Ninety per cent of people in the UK who know their child will be born with Down's syndrome have an abortion - so there are concerns a new, highly accurate test to identify babies with the condition, will lead to even more terminations.

"The doctor said to us: 'I'm sorry, I'm so sorry.' The nurse on duty cried. I don't think anyone said anything at all positive," says Sally Phillips. "It wouldn't have been any different if they'd told me my child wasn't going to make it."

Her son, Olly, was 10 days old, when he was tested for Down's syndrome - the results came back positive. But Phillips - the actress and screenwriter best known for her roles in Miranda and Bridget Jones - found life with a child with Down's syndrome was not what the hushed tones and apologies had led her to expect

"I was told it was a tragedy and actually it's a comedy. It's like a sitcom where something appears to go wrong but there's nothing bad at the end of it."

She describes life in her family as "just slightly funnier than in other families," thanks to Olly, who is now 12 and goes to a mainstream secondary school. She also has two younger children, neither of whom have Down's.

"Having Olly in my life has changed me and my family for the better. He has slightly worse impulse control but that means that it's very funny because he's often saying exactly what everybody's thinking but is too shy to say.

"He's also incredibly caring. He's the only one of my three kids who every single day will ask me how my day was. He's really kind. He's really focused on other people. He's really gifted emotionally. He'll notice if people are upset when I won't."

Find out more

Sally Phillips explores the issues around the new prenatal test in A World Without Down's Syndrome at 21:00 on Wednesday 5 October on BBC Two.

In the UK, about 750 babies are born with Down's syndrome every year and there are an estimated 40,000 people in the country living with the condition.

Most people have 23 pairs of chromosomes, but people with Down's have an extra copy of chromosome 21, which means they develop differently and have varying levels of learning disability. Some children with Down's have few health problems, but certain medical complications - such as heart, gut, hearing, or thyroid conditions - are more common in people with Down's.

The current NHS screening, which is offered to all pregnant women, gives an indication of the likelihood that a baby will have Down's. If the foetus has the condition, there is an 85% to 90% chance that the existing test will pick it up, but about 2.5% of positive results are false and these babies don't have Down's.

At the moment, the next step is amniocentesis or CVS (chorionic villus sampling), the only diagnostic tests that can definitively show whether a baby has Down's syndrome. Both of these tests are invasive - a needle is used to take a sample of the fluid surrounding the baby or cells from the placenta - and come with a risk of miscarriage. It's a risk some women are not willing to take.

This is where NIPT - the new non-invasive prenatal blood test - comes in. It could soon be offered to women as an extra, second step in the screening process. It is 99% accurate and carries no risk of miscarriage.

So the false positives will be identified earlier and fewer invasive tests carried out.

That sounds good - but some people, including Sally Phillips, worry it will mean that more foetuses with Down's will be identified and aborted.

NIPT is already available in private clinics. One woman in her 20s who used it to find out that her baby had Down's syndrome met up with Phillips to talk about her experience.

After a positive NIPT test she went ahead with an invasive test which confirmed the result.

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

It was her first pregnancy. Unsure of what life for the child would be like, she and her partner did some research online looking at news reports, videos of people with Down's and support group websites.

"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," she says. They found a lot of positive and inspirational testimonies, but some were troubling.

"There were blogs by mums so you see some of the difficulties that 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," she says.

"If my child was affected as much as he was I would feel really guilty about that having been given the choice. Even the best case scenario isn't what I want for my son."

So she and her partner decided to end the pregnancy. "We felt that was the best thing for the baby," she says.

For Phillips it can be difficult to accept that someone doesn't want a child like hers.

And she is worried that her son will grow up in a world where more parents choose not to give birth to babies diagnosed with the condition. She gives the example of Iceland, where almost everyone screens for Down's and 100% of women who have a positive diagnosis now terminate.

Icelandic photographer Sigga Ella, whose aunt had the condition, took a series of portraits of people with Down's to raise awareness of the Down's community there.

But in the UK about a third of pregnant women opt out of screening, so if that remains the case, any of these babies who have Down's will continue to go undetected until they are born.

In the UK the new test is being developed by Lyn Chitty at Great Ormond Street Hospital - professor of genetics and foetal medicine.

She carried out a study to see what women do when they are offered NIPT. Based on this research she believes that an extra 195 babies with Down's could be diagnosed in England and Wales each year before birth.

But even though 90% of women in the UK with a positive Down's diagnosis have abortions, she doesn't believe it means most of these 195 pregnancies will be terminated.

"I really do not think that we are going to be screening out Down's syndrome," she says. "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.

"The trouble is everybody's looking at hypothetical scenarios, they're looking at 'what if' situations.

"We found that a lot of women were using the NIPT test to find out whether their baby's got Down's syndrome, inform themselves and carry on with the pregnancy. If you look at our statistics it will not significantly change the live birth rate."

The statistics relating to terminations are complex and interpreted differently by each side of the debate. But all experts agree that the way a diagnosis of Down's syndrome is presented can influence whether parents choose to continue with the pregnancy.

"The whole essence of a good screening programme is the counselling you have before you even have the blood test done or the scan done," says Alan Cameron, foetal medicine consultant at Queen Elizabeth Hospital in Glasgow.

"You've got to be given an educated choice, but certainly my experience is that much fewer women would terminate now than they ever did before because I think things are better... people see Down's kids having good, healthy, lives, working in the community, you see kids around with Down's syndrome that are doing a good job."

In the early 1980s life expectancy for a child born with Down's was 25 years, but today it's about 60, with some living into their 70s. And a report published in 2014 shows how employers can benefit from hiring staff with Down's.

Screening has never been a case of "let's try and eradicate Down's syndrome from the population," says Cameron. "That's never been the mission... It was all on the back of women's choice."

He admits, though, that while medics have long considered the ethics and consequences of screening among themselves, they haven't been very good at discussing this with their patients and the public.

This is where the Nuffield Council on Bioethics comes in. While the government gets ready to announce the roll-out of NIPT across the NHS, the council has been speaking to scientists, doctors, policy makers, people with Down's and their families to assess what impact it could have.

Ultimately you could have whole genome sequencing so you could test that sample for everything
Tom Shakespeare, Nuffield Council on Bioethics

"There has been screening for Down's Syndrome for decades, so in terms of the enterprise of offering women informed choice NIPT doesn't really change that," says Tom Shakespeare, chairman of the Nuffield working group, which plans to publish its report in February.

But it does open the door to testing for other conditions.

"It could be used by people who have a single gene condition, like cystic fibrosis or muscular dystrophy or achondroplasia - my own condition," he says.

"Ultimately you could have whole genome sequencing so you could test that sample for everything - it's the next step and because NIPT is non-invasive you're not going to risk the foetus."

And for him, like Sally Phillips, it comes back to how results and information are given to prospective parents.

"I support the option of screening for those that want it but it needs to be on the basis of good quality information - why are prospective parents not being given the full information about Down's syndrome?"

"It's not just about trisomy 21 (Down's syndrome) or risk of intellectual disability - it's also about what are people's lives like? What barriers do they face? Do they suffer? If you're potentially having a baby with a condition, that's what you want to know - how will it affect my family? How will it affect my child? How will it affect their life? How much of a problem is it?"

These are questions the new blood test is not able to answer.
Karen Gaffney is a 38 year-old American woman with Down's syndrome. Last year she gave a TED talk on why her life matters. This is an edited version of her speech - you can watch the full version here.
I would like to start by telling you about my fifth grade teacher. It was her first year of teaching when I showed up in her class. She didn't know anything about Down syndrome but that didn't matter, because she knew I wanted to learn, and she wanted to teach. She and I have stayed in touch. A few years ago, I got a special letter from her - she told me that she was pregnant and she needed my help, because her baby would be born with Down syndrome!

She pushed back on any discussion of termination because she knew Down syndrome from a completely different perspective than her doctor did. She taught him about her fifth grade student... me!

There was a time when people like me were institutionalised. When I was born, the doctor predicted that I would be lucky to be able to tie my own shoes or write my own name - he forgot to mention the part about me swimming the English Channel.

We have begun to see more and more young people with Down syndrome graduating from high schools, some going on to higher education and learning employable skills. There are accomplished musicians, artists, golfers, models, actors and public speakers, as well as good employees making significant contributions to their companies and communities. These are all role models for what can be done in spite of one extra chromosome.

It's far from perfect, though, breakthroughs haven't come for everyone and we still have battles to fight for inclusion.

And it seems the race is on to find newer, faster ways to test for that extra chromosome before birth - the problem is without timely and accurate information, about all our progress, if the test shows an extra chromosome, pregnancies are being terminated. We have those who say we shouldn't even be born at all.

I believe Down syndrome is a life worth saying yes to. Every life matters regardless of the number of chromosomes we have.

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Ninety per cent of people in the UK who know their child will be born with Down's syndrome have an abortion - so there are concerns a new, highly accurate test to identify babies with the condition, will lead to even more terminations. "The doctor said to us: 'I'm sorry, I'm so sorry.'

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96.5% of Japanese women commit abortion.
This number surprises me and hearts me heart, but as a Japanese I understand the high termination rate. Japanese care social status more than personalities or humanities.

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Hulda Hjartardóttir, a head of the Prenatal Diagnosis Unit in Landspítali University Hospital in Reykjavik, says  "We try to do as neutral counseling as possible, but some people would say that just offering the test is pointing you toward a certain direction."

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Preparing for a new baby means lots of visits to the doctor and lots of tests.

One common test for mothers-to-be is screening for Down syndrome, a genetic disorder resulting from a full or partial extra copy of chromosome 21.

In the United States each year, more than 6,000 babies with Down syndrome are born, according to the National Down Syndrome Society.

However, almost none are born in Iceland.

That's because nearly 100 percent of women in Iceland who receive a positive test for Down syndrome choose to terminate the pregnancy.

Iceland isn't alone in having high termination rates.

In Denmark, 98 percent of pregnancies with a Down syndrome diagnosis are terminated.

In France, it's 77 percent, and in the United States it's 67 percent.

In Iceland, the law permits abortions after 16 weeks if the fetus has a deformity.

As a result, only one or two babies with Down syndrome are now born each year in Iceland, which has a population of 330,000.

'Troubling diagnosis'

One expert interviewed by CBS News suggested that by requiring that women be informed that prenatal testing for Down syndrome is available, Iceland is suggesting (or pushing) them to terminate a Down syndrome pregnancy.

"We try to do as neutral counseling as possible, but some people would say that just offering the test is pointing you toward a certain direction," said Hulda Hjartardóttir, head of the Prenatal Diagnosis Unit in Landspítali University Hospital in Reykjavik.

That view is also held by Eric Scheidler, the executive director of Pro-Life Action League.

"I think that kind of [prenatal] testing is appropriate for parents who want it, but it should be used in order to prepare for caring for a child," Scheidler said.

He believes that parents-to-be are pressured by healthcare professionals to terminate pregnancies with a "troubling diagnosis."

"Parents are being urged to abort their children," he said. "There's really not a fair presenting of options being offered to parents."

He added, "Having gotten to know several people with Down syndrome in my life, I am horrified by the thought that Iceland, and Western society in general, is rejecting these children."

'This is about politics'

In the U.S., numerous states have attempted to restrict prenatal testing for Down syndrome, spina bifida, or more generally, "genetic abnormalities," through legislation.

In 2016, the Missouri State Senate introduced a ban on abortions based on prenatal testing that showed a diagnosis of Down syndrome.

The bill was defeated.

According to Planned Parenthood Advocates of Missouri, anti-abortion legislators wrote that bill specifically about Down syndrome as an attempt to make it "a wedge issue in [legislators'] efforts to ban abortion altogether."

"This is about politics and taking away women's ability to make personal, private, and often complicated decisions," Planned Parenthood Advocates of Missouri stated in a fact sheet. "This bill does nothing to address the serious underlying concerns about discrimination against people with disabilities."

Officials at Planned Parenthood's national office did not respond to a request from Healthline for an interview for this story.

Elsewhere, bills attempting to restrict abortion after a diagnosis of Down syndrome or other genetic abnormalities also failed to pass in South Dakota, Indiana, Ohio, New Hampshire, and Oklahoma.

A 2015 bill introduced in the Texas House of Representatives also failed. The bill would have prohibited the Department of Health from providing written information that mentioned abortion as an option after a Down syndrome diagnosis.

'Eradicating Down syndrome'

Advocates for people with Down syndrome are concerned by the news out of Iceland.

Sara Hart Weir, MS, president of the National Down Syndrome Society, said her organization was "deeply concerned" by the trend.

"We do not condone the actions of a country to eradicate individuals with Down syndrome," she told Healthline.

She noted these prenatal tests are not regulated by the U.S. Food and Drug Administration (FDA).

Weir also shared Scheidler's view that parents-to-be are not being properly informed by healthcare professionals about what life with a child with Down syndrome could be like.

"Women - even in the United States of America - are not receiving accurate, up-to-date information about Down syndrome from their healthcare providers - a vital issue we have advocated for, for many, many decades," she said.

Weir said people with Down syndrome need to be accepted as part of society.

"In the U.S., people with Down syndrome continue to exceed expectations," she said. "Individuals with Down syndrome live independently, go to college, work in competitive jobs, get married, live to their full potential, and lead fulfilling lives."

Testing for Down syndrome

Screening tests for Down syndrome are optional in Iceland.

However, the government requires that mothers be informed that such tests exist.

As many as 85 percent of pregnant women choose to take the available screening tests, CBS News reported.

The first screening test, which is administered in the first trimester, does not conclusively diagnose Down syndrome. Rather, it predicts the likelihood that the fetus may have the chromosomal abnormality.

The first consideration for medical professionals is the mother's age, as the risk of Down syndrome increases as a woman gets older.

Next, doctors will perform a blood test that checks for abnormal levels of plasma.

Then they administer an ultrasound that focuses on an area near the fetus' neck. According to the Mayo Clinic, "When abnormalities are present, more fluid than usual tends to collect in this neck tissue."

In some cases, these tests are performed in two parts called the integrated screening test, and occur during the second trimester.

If initial screening suggests a likelihood that the fetus will have Down syndrome, then diagnostic tests can also be used.

These include amniocentesis, which takes samples of amniotic fluid from inside the uterus to test, as well as testing cells from the placenta.

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debate over abortions and prenatal tests

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Preparing for a new baby means lots of visits to the doctor and lots of tests. One common test for mothers-to-be is screening for Down syndrome, a genetic disorder resulting from a full or partial extra copy of chromosome 21.

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This caused by abnormal cell division creates an extra genetic material form chromes 21.
Chromes 21causes developmental and intellectual delays.
Chromes - DNA is tided in it. DNA is important to create cells and proteins.

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What is Down Syndrome?

In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.

This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm - although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all.

How Common is Down Syndrome?

According to the Centers for Disease Control and Prevention, approximately one in every 700 babies in the United States is born with Down syndrome, making Down syndrome the most common chromosomal condition. About 6,000 babies with Down syndrome are born in the United States each year.

When Was Down Syndrome Discovered?

For centuries, people with Down syndrome have been alluded to in art, literature and science. It wasn't until the late nineteenth century, however, that John Langdon Down, an English physician, published an accurate description of a person with Down syndrome. It was this scholarly work, published in 1866, that earned Down the recognition as the "father" of the syndrome. Although other people had previously recognized the characteristics of the syndrome, it was Down who described the condition as a distinct and separate entity.

In recent history, advances in medicine and science have enabled researchers to investigate the characteristics of people with Down syndrome. In 1959, the French physician Jérôme Lejeune identified Down syndrome as a chromosomal condition. Instead of the usual 46 chromosomes present in each cell, Lejeune observed 47 in the cells of individuals with Down syndrome. It was later determined that an extra partial or whole copy of chromosome 21 results in the characteristics associated with Down syndrome. In the year 2000, an international team of scientists successfully identified and catalogued each of the approximately 329 genes on chromosome 21. This accomplishment opened the door to great advances in Down syndrome research.

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What is Down Syndrome? | National Down Syndrome Society

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What is Down Syndrome? In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes.

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6,000 babies with Down Syndrome are born in the United States in each year.

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Women likely to have down syndrome babies when they get older. However, 80% of children with Down syndrome are born to women under 35 years of age.

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Facts, Myths & Truths About Down Syndrome

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Human Rights Organization for Individuals with Down syndrome

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People who are Down Syndrome have the weak immune system, thus their survival rate is weak. A few decades ago, the average life age of Down Syndrome was 20 years old. However these days, the medical science improves and supports them to live until 60 years old.

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What is Down Syndrome?

Down syndrome is a genetic condition that causes delays in physical and intellectual development. It occurs in 1 in every 792 live births. Individuals with Down syndrome have 47 chromosomes instead of the usual 46. It is the most frequently occurring chromosomal disorder. Down syndrome is not related to race, nationality, religion or socioeconomic status. The most important fact to know about individuals with Down syndrome is that they are more like others than they are different.

Diagnosis

Down syndrome is usually identified at birth or shortly thereafter. Initially the diagnosis is based on physical characteristics that are commonly seen in babies with Down syndrome. These include low muscle tone, a single crease across the palm of the hand, a slightly flattened facial profile and an upward slant to the eyes. The diagnosis must be confirmed by a chromosome study (karyotype). A karyotype provides a visual display of the chromosomes grouped by their size, number and shape. Chromosomes may be studied by examining blood or tissue cells.

Cause

Down syndrome is usually caused by an error in cell division called nondisjunction. It is not known why this occurs. However, it is known that the error occurs at conception and is not related to anything the mother did during pregnancy. It has been known for some time that the incidence of Down syndrome increases with advancing maternal age. However, 80% of children with Down syndrome are born to women under 35 years of age.

Types of Down Syndrome

There are three chromosomal patterns that result in Down syndrome:

1. Trisomy 21 (nondisjunction) is caused by a faulty cell division that results in the baby having three #21 chromosomes instead of two. Prior to or at conception, a pair of #21 chromosomes in either the egg or the sperm fails to separate properly. The extra chromosome is replicated in every cell of the body. Ninety-five percent of all people with Down syndrome have Trisomy 21.

2. Translocation accounts for only 3% to 4% of all cases. In translocation a part of chromosome #21 breaks off during cell division and attaches to another chromosome. The presence of an extra piece of the 21st chromosome causes the characteristics of Down syndrome. Unlike Trisomy 21, which is the result of random error in the early cell division, translocation may indicate that one of the parents is carrying chromosomal material that is arranged in an unusual manner. Genetic counseling can be sought to ascertain more information when these circumstances occur.

3. Mosaicism occurs when nondisjunction of chromosome #21 takes place in one of the initial cell divisions after fertilization. When this happens, there is a mixture of two types of cells, some containing 46 chromosomes and some 47. The cells with 47 chromosomes contain an extra 21st chromosome. Because of the "mosaic" pattern of the cells, the term mosaicism is used. This type of Down syndrome occurs in only one to two percent of all cases of Down syndrome.

Regardless of the type of Down syndrome a person may have, a critical portion of the 21st chromosome is present in some or all of their cells. This additional genetic material alters the course of development and causes the characteristics associated with the syndrome.

Learning & Development

It is important to remember that while children and adults with Down syndrome experience developmental delays, they also have many talents and gifts and should be given the opportunity and encouragement to develop them.

Most children with Down syndrome have mild to moderate impairments but it is important to note that they are more like other children than they are different. Early Intervention services should be provided shortly after birth. These services should include physical, speech and developmental therapies. Most children attend their neighborhood schools, some in regular classes and others in special education classes. Some children have more significant needs and require a more specialized program.

Some high school graduates with Down syndrome participate in post-secondary education. Many adults with Down syndrome are capable of working in the community, but some require a more structured environment.

Health Issues

Many children with Down syndrome have health complications beyond the usual childhood illnesses. Approximately 40% of the children have congenital heart defects. It is very important that an echocardiogram be performed on all newborns with Down syndrome in order to identify any serious cardiac problems that might be present. Some of the heart conditions require surgery while others only require careful monitoring. Children with Down syndrome have a higher incidence of infection, respiratory, vision and hearing problems as well as thyroid and other medical conditions. However, with appropriate medical care most children and adults with Down syndrome can lead healthy lives. The average life expectancy of individuals with Down syndrome is 60 years, with many living into their sixties and seventies.

Prenatal Diagnosis

Two types of procedures are available to pregnant women: screening tests and diagnostic tests. The screening tests estimate the risk of the baby having Down syndrome. Diagnostic tests tell whether or not the baby actually has Down syndrome.
Screening Tests

Maternal serum tests, such as the triple screen or quad screen, measure quantities of various substances in the blood. These tests are usually done between 15 and 20 weeks gestation.

Newer non-invasive tests have been developed which look for genetic material from the baby in the mother's blood. They can be done earlier in the pregnancy and are more accurate than other screening tests, but they are currently recommended only for "high risk" pregnancies.

Sonograms (ultrasounds) are usually performed in conjunction with other screenings. These can show some physical traits that are helpful in calculating the risk of Down syndrome.

Screening tests do not accurately confirm the diagnosis of Down syndrome. In fact, false positives and false negatives frequently occur.

Diagnostic Tests
Three diagnostic tests are currently available:

Chorionic Villus Sampling (CVS) is conducted between 10 and 12 weeks. In this test, a small piece of the placenta (chorionic villus) will be taken and analyzed.

Amniocentesis is performed between 14 and 20 weeks. A small sample of amniotic fluid is drawn, and cells in the fluid are tested.

Percutaneous Umbilical Blood Sampling (PUBS) is performed after 18 weeks. This test examines blood from the umbilical cord.

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National Association for Down Syndrome | Facts About Down Syndrome

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Down syndrome is a genetic condition that causes delays in physical and intellectual development. It occurs in 1 in every 792 live births. Individuals with Down syndrome have 47 chromosomes instead of the usual 46. It is the most frequently occurring chromosomal disorder. Down syndrome is not related to race, nationality, religion or socioeconomic status.

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Centers for Disease Control and Prevention

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Down syndrome is a condition in which a person has an extra chromosome

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In Ice Land, usually two kids with Down Syndrome are bone in a year.

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Society Thinks Down Syndrome as Negative thing 

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Society Thinks Down Syndrome as Negative thing 

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"I was told it was a tragedy and actually it's a comedy. It's like a sitcom where something appears to go wrong but there's nothing bad at the end of it" by Sally Phillips. (UK)

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Ninety per cent of people in the UK who know their child will be born with Down's syndrome have an abortion - so there are concerns a new, highly accurate test to identify babies with the condition, will lead to even more terminations.

"The doctor said to us: 'I'm sorry, I'm so sorry.' The nurse on duty cried. I don't think anyone said anything at all positive," says Sally Phillips. "It wouldn't have been any different if they'd told me my child wasn't going to make it."

Her son, Olly, was 10 days old, when he was tested for Down's syndrome - the results came back positive. But Phillips - the actress and screenwriter best known for her roles in Miranda and Bridget Jones - found life with a child with Down's syndrome was not what the hushed tones and apologies had led her to expect

"I was told it was a tragedy and actually it's a comedy. It's like a sitcom where something appears to go wrong but there's nothing bad at the end of it."

She describes life in her family as "just slightly funnier than in other families," thanks to Olly, who is now 12 and goes to a mainstream secondary school. She also has two younger children, neither of whom have Down's.

"Having Olly in my life has changed me and my family for the better. He has slightly worse impulse control but that means that it's very funny because he's often saying exactly what everybody's thinking but is too shy to say.

"He's also incredibly caring. He's the only one of my three kids who every single day will ask me how my day was. He's really kind. He's really focused on other people. He's really gifted emotionally. He'll notice if people are upset when I won't."

Find out more

Sally Phillips explores the issues around the new prenatal test in A World Without Down's Syndrome at 21:00 on Wednesday 5 October on BBC Two.

In the UK, about 750 babies are born with Down's syndrome every year and there are an estimated 40,000 people in the country living with the condition.

Most people have 23 pairs of chromosomes, but people with Down's have an extra copy of chromosome 21, which means they develop differently and have varying levels of learning disability. Some children with Down's have few health problems, but certain medical complications - such as heart, gut, hearing, or thyroid conditions - are more common in people with Down's.

The current NHS screening, which is offered to all pregnant women, gives an indication of the likelihood that a baby will have Down's. If the foetus has the condition, there is an 85% to 90% chance that the existing test will pick it up, but about 2.5% of positive results are false and these babies don't have Down's.

At the moment, the next step is amniocentesis or CVS (chorionic villus sampling), the only diagnostic tests that can definitively show whether a baby has Down's syndrome. Both of these tests are invasive - a needle is used to take a sample of the fluid surrounding the baby or cells from the placenta - and come with a risk of miscarriage. It's a risk some women are not willing to take.

This is where NIPT - the new non-invasive prenatal blood test - comes in. It could soon be offered to women as an extra, second step in the screening process. It is 99% accurate and carries no risk of miscarriage.

So the false positives will be identified earlier and fewer invasive tests carried out.

That sounds good - but some people, including Sally Phillips, worry it will mean that more foetuses with Down's will be identified and aborted.

NIPT is already available in private clinics. One woman in her 20s who used it to find out that her baby had Down's syndrome met up with Phillips to talk about her experience.

After a positive NIPT test she went ahead with an invasive test which confirmed the result.

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

It was her first pregnancy. Unsure of what life for the child would be like, she and her partner did some research online looking at news reports, videos of people with Down's and support group websites.

"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," she says. They found a lot of positive and inspirational testimonies, but some were troubling.

"There were blogs by mums so you see some of the difficulties that 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," she says.

"If my child was affected as much as he was I would feel really guilty about that having been given the choice. Even the best case scenario isn't what I want for my son."

So she and her partner decided to end the pregnancy. "We felt that was the best thing for the baby," she says.

For Phillips it can be difficult to accept that someone doesn't want a child like hers.

And she is worried that her son will grow up in a world where more parents choose not to give birth to babies diagnosed with the condition. She gives the example of Iceland, where almost everyone screens for Down's and 100% of women who have a positive diagnosis now terminate.

Icelandic photographer Sigga Ella, whose aunt had the condition, took a series of portraits of people with Down's to raise awareness of the Down's community there.

But in the UK about a third of pregnant women opt out of screening, so if that remains the case, any of these babies who have Down's will continue to go undetected until they are born.

In the UK the new test is being developed by Lyn Chitty at Great Ormond Street Hospital - professor of genetics and foetal medicine.

She carried out a study to see what women do when they are offered NIPT. Based on this research she believes that an extra 195 babies with Down's could be diagnosed in England and Wales each year before birth.

But even though 90% of women in the UK with a positive Down's diagnosis have abortions, she doesn't believe it means most of these 195 pregnancies will be terminated.

"I really do not think that we are going to be screening out Down's syndrome," she says. "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.

"The trouble is everybody's looking at hypothetical scenarios, they're looking at 'what if' situations.

"We found that a lot of women were using the NIPT test to find out whether their baby's got Down's syndrome, inform themselves and carry on with the pregnancy. If you look at our statistics it will not significantly change the live birth rate."

The statistics relating to terminations are complex and interpreted differently by each side of the debate. But all experts agree that the way a diagnosis of Down's syndrome is presented can influence whether parents choose to continue with the pregnancy.

"The whole essence of a good screening programme is the counselling you have before you even have the blood test done or the scan done," says Alan Cameron, foetal medicine consultant at Queen Elizabeth Hospital in Glasgow.

"You've got to be given an educated choice, but certainly my experience is that much fewer women would terminate now than they ever did before because I think things are better... people see Down's kids having good, healthy, lives, working in the community, you see kids around with Down's syndrome that are doing a good job."

In the early 1980s life expectancy for a child born with Down's was 25 years, but today it's about 60, with some living into their 70s. And a report published in 2014 shows how employers can benefit from hiring staff with Down's.

Screening has never been a case of "let's try and eradicate Down's syndrome from the population," says Cameron. "That's never been the mission... It was all on the back of women's choice."

He admits, though, that while medics have long considered the ethics and consequences of screening among themselves, they haven't been very good at discussing this with their patients and the public.

This is where the Nuffield Council on Bioethics comes in. While the government gets ready to announce the roll-out of NIPT across the NHS, the council has been speaking to scientists, doctors, policy makers, people with Down's and their families to assess what impact it could have.

Ultimately you could have whole genome sequencing so you could test that sample for everything
Tom Shakespeare, Nuffield Council on Bioethics

"There has been screening for Down's Syndrome for decades, so in terms of the enterprise of offering women informed choice NIPT doesn't really change that," says Tom Shakespeare, chairman of the Nuffield working group, which plans to publish its report in February.

But it does open the door to testing for other conditions.

"It could be used by people who have a single gene condition, like cystic fibrosis or muscular dystrophy or achondroplasia - my own condition," he says.

"Ultimately you could have whole genome sequencing so you could test that sample for everything - it's the next step and because NIPT is non-invasive you're not going to risk the foetus."

And for him, like Sally Phillips, it comes back to how results and information are given to prospective parents.

"I support the option of screening for those that want it but it needs to be on the basis of good quality information - why are prospective parents not being given the full information about Down's syndrome?"

"It's not just about trisomy 21 (Down's syndrome) or risk of intellectual disability - it's also about what are people's lives like? What barriers do they face? Do they suffer? If you're potentially having a baby with a condition, that's what you want to know - how will it affect my family? How will it affect my child? How will it affect their life? How much of a problem is it?"

These are questions the new blood test is not able to answer.
Karen Gaffney is a 38 year-old American woman with Down's syndrome. Last year she gave a TED talk on why her life matters. This is an edited version of her speech - you can watch the full version here.
I would like to start by telling you about my fifth grade teacher. It was her first year of teaching when I showed up in her class. She didn't know anything about Down syndrome but that didn't matter, because she knew I wanted to learn, and she wanted to teach. She and I have stayed in touch. A few years ago, I got a special letter from her - she told me that she was pregnant and she needed my help, because her baby would be born with Down syndrome!

She pushed back on any discussion of termination because she knew Down syndrome from a completely different perspective than her doctor did. She taught him about her fifth grade student... me!

There was a time when people like me were institutionalised. When I was born, the doctor predicted that I would be lucky to be able to tie my own shoes or write my own name - he forgot to mention the part about me swimming the English Channel.

We have begun to see more and more young people with Down syndrome graduating from high schools, some going on to higher education and learning employable skills. There are accomplished musicians, artists, golfers, models, actors and public speakers, as well as good employees making significant contributions to their companies and communities. These are all role models for what can be done in spite of one extra chromosome.

It's far from perfect, though, breakthroughs haven't come for everyone and we still have battles to fight for inclusion.

And it seems the race is on to find newer, faster ways to test for that extra chromosome before birth - the problem is without timely and accurate information, about all our progress, if the test shows an extra chromosome, pregnancies are being terminated. We have those who say we shouldn't even be born at all.

I believe Down syndrome is a life worth saying yes to. Every life matters regardless of the number of chromosomes we have.

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Ninety per cent of people in the UK who know their child will be born with Down's syndrome have an abortion - so there are concerns a new, highly accurate test to identify babies with the condition, will lead to even more terminations. "The doctor said to us: 'I'm sorry, I'm so sorry.'

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Society Thinks Down Syndrome as Negative thing 2

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Society Thinks Down Syndrome as Negative thing 2

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“The first thing the doctor said to me, straight after telling me my test results, was ‘Let’s book in a termination" by Western Australian mother Emily McCain.

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Australian mothers-to-be are increasingly choosing to terminate their pregnancy if their baby tests positive for Down syndrome.

Down syndrome terminations have increased dramatically since the early 1990s, with the latest data out of Western Australia showing that about 93 per cent of prenatal diagnoses in the state are being aborted.

That figure, if replicated nationwide, would put Australia in a similar range to countries like Iceland where the rate is close to 100 per cent and Denmark at 98 per cent. Nations with lower rates include the United States with 67 per cent and France with 77 per cent.

The ABC's Lateline program last year reported that Australian abortions after positive Down syndrome tests were estimated at between 80 and 90 per cent.

Fewer than 270 babies are born with Down syndrome each year in Australia - one in 1100 babies.

Western Australian mother Emily McCain, 34, told The New Daily she was concerned misinformation was influencing women's decisions to terminate Down syndrome pregnancies.

She said her own doctor had pressured her to abort her baby - now a healthy eight-year-old - and that, anecdotally, she is not the only one to have had this "upsetting" experience.

"Thirteen weeks into my pregnancy, tests showed a high chance that my child would have Down syndrome - one in 78. Then the amnio test confirmed a definite 'yes' that my baby girl would have Down syndrome," Ms McCain said.

"The first thing the doctor said to me, straight after telling me my test results, was 'Let's book in a termination'.

"At that stage, I was halfway through my pregnancy, and my doctor was advising me to terminate the baby ... I was pretty upset.

"Being told to terminate your baby by a doctor makes you doubt whether you're making the right decision."

Ms McCain said she was shocked at how Down syndrome was made out to be a "terrible thing" and that she received no information or referral support prior to the pregnancy.

"In all my scans, the baby was otherwise completely healthy. The Down syndrome didn't scare me," she said.

"The first time I held her and I looked into her eyes, I saw this perfect little baby. I didn't feel any regret. I knew I'd made the right decision.

"Maybe it isn't for everyone, I don't look badly on people who choose to terminate, but I do worry people aren't making fully informed decisions."

University of Western Australia researcher Carol Bower, involved with the above study, told The New Daily she attributed the significant rise in Down syndrome terminations to the increased access to reliable screening tests.

Is there such thing as a 'perfect child'?

University of Sydney bioethicist Dr Tereza Hendl said testing being more widely available had normalised the termination of Down syndrome pregnancies.

"Already fewer children with Down syndrome are being born and we need to ask whether this is a result of stigma associated with intellectual impairment and lack of social support for families with children with Down syndrome," she said.

"There are serious ethical concerns. A woman who decides to have a child with Down syndrome can be stigmatised and labeled as a 'burden on society'. In the future, families with children with Down syndrome could find it hard to find social support.

"The concept of a 'perfect child' is troubling. Who gets to define perfection? How far do we go? There is an important difference between prevention of life-threatening conditions and selection for a 'perfect child'."

In response to increasing termination rates, Dr Hendl said she would like to see better counselling procedures in place to ensure prospective parents are better informed about their options.

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Down syndrome abortions are nearing 100 per cent

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Australian mothers-to-be are increasingly choosing to terminate their pregnancy if their baby tests positive for Down syndrome. Down syndrome terminations have increased dramatically since the early 1990s, with the latest data out of Western Australia showing that about 93 per cent of prenatal diagnoses in the state are being aborted.

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The Screen Test is not to stop the Babies heart. 

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The Screen Test is not to stop the Babies heart. 

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Approximately 67% of all children with Down syndrome are aborted and 92% of those diagnosed with the condition lose their lives to abortion. There are many in this world willing to stop a child’s beating heart simply because her or she was diagnosed with Down syndrome.
A Down syndrome diagnosis is not a death sentence nor a guarantee that children will not live full and happy lives.

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Why do so many in our culture want to eliminate unborn children with disabilities such as Down syndrome? On March 9th, the deputy editorial page editor of the Washington Post, Ruth Marcus, wrote an article entitled, " I would've aborted a fetus with Down syndrome. Women need that right." When parents of children with Down syndrome strongly criticized her argument, she doubled down on her position by writing a subsequent article entitled, "The silenced majority of women who would abort a fetus with Down syndrome." Marcus insisted that she is part of the majority of women who believe that abortion is better than bringing a child with Down syndrome into the world. From her first article:

I respect - I admire - families that knowingly welcome a baby with Down syndrome into their lives. Certainly, to be a parent is to take the risks that accompany parenting; you love your child for who she is, not what you want her to be. But accepting that essential truth is different from compelling a woman to give birth to a child whose intellectual capacity will be impaired, whose life choices will be limited, whose health may be compromised. Most children with Down syndrome have mild to moderate cognitive impairment, meaning an IQ between 55 and 70 (mild) or between 35 and 55 (moderate). This means limited capacity for independent living and financial security; Down syndrome is life-altering for the entire family.

Marcus, and her supporters in the article's comments, are quick to argue that individuals facing Down syndrome are at a cognitive "disadvantage" with their peers. Why burden a family, and by extension, the child by unnecessarily bringing them into the world?

On one level, Marcus' argument that most people abort children with Down syndrome is correct. Approximately 67% of all children with Down syndrome are aborted and 92% of those diagnosed with the condition lose their lives to abortion. There are many in this world willing to stop a child's beating heart simply because her or she was diagnosed with Down syndrome. However, what Marcus neglects to mention is that many of these decisions are based on limited information regarding Down syndrome's effects on children or their parents.

Advocates for those diagnosed with Down syndrome argue that many of these abortions stem from misconceptions about Down syndrome. A Down syndrome diagnosis is not a death sentence nor a guarantee that children will not live full and happy lives. Contrary to popular opinion, the research shows that children and adults with Down syndrome are extremely likely to be satisfied with their lives.

In a study published in the American Journal of Medical Genetics, researchers surveyed 284 people with Down syndrome ages 12 and older and asked them questions about their happiness and life-satisfaction. They found:

99 percent said they were happy with their lives

97 percent liked who they are

96 percent liked how they look

86 percent indicated they could make friends easily

Only 4 percent expressed sadness about their life

The same researchers published another study where they interviewed over 2,000 parents of Down syndrome children. They found:

99% reported that they loved their son or daughter

97% were proud of their child

79% felt their outlook on life was more positive because of their child with Down syndrome

4% regretted having them.

According to the American Psychological Association, 28% of women will regret their abortion within two years. This means that a woman is seven times more likely to regret her abortion decision than she is to regret giving birth to a child with Down syndrome.

Unfortunately, many pro-choice activists work to suppress these facts. Nowhere in Marcus' article does she mention these studies or link to them. Why not? If in fact this is a "painful" choice each woman should make on her own, shouldn't she make it with all the facts? Why are pro-choice writers like Marcus so determined to eliminate these children when we know they and their parents are very likely to live happy and productive lives?

I think it is because they are uncomfortable with how satisfied these "disabled" individuals and their parents are with their "constrained" lives. After all, individuals with Down syndrome have lower IQs, fewer job prospects, and require more supervision than their peers, yet they love life in a way that few of us ever experience. Every time I meet someone with Down syndrome, I leave the encounter marveling at their outlook on life. Every happy adult with Down syndrome is living proof that Marcus' hypothetical abortion is fundamentally selfish and shortsighted. That no matter how much she or anyone else tries to varnish their decision with appeals to "freedom of conscience," "bodily autonomy," or "choice," it is nothing more than eugenics by another name. It is saying that one individual has the right to stop the beating heart of another simply because their condition makes us uncomfortable.

I am reminded of reading Christ's words to the Pharisees and social elite of His day. These powerful men refused to assign much value to children. Even Christ's own disciples attempted to refuse them access to the Savior. Yet, Jesus ordered that children be allowed in His presence and told the shocked crowd that the Kingdom of Heaven was made up of those who had childlike faith. The elite scoffed at this. To become childlike in their perspective on life was a bridge too far.

Today, I fear many have the same reaction. Our society prides itself on its "progress," yet we act much like the Pharisees. We tell ourselves that more money, more possessions, and higher IQs will make us happy, yet anti-depressants fly off pharmacy shelves. Maybe it is we who have something wrong with our outlook on life and not the individuals with Down syndrome that our society works so hard to eradicate. Maybe instead of killing these children so they don't grow up happy in spite of their "disability," we should examine our own values and see why our satisfaction is so hard to attain.

If we don't, if we continue down the path of Ruth Marcus and those like her, then we may just succeed in eradicating all children with Down syndrome in the womb and deny ourselves lasting satisfaction in the process. True and lasting satisfaction is not found in eliminating someone who gets in the way of our goals, dreams, or desires, but in making those around us and their betterment our goal, dream, and desire. In short, lasting happiness is found in loving our neighbor as ourselves.

That is something aborting a child with Down syndrome will never provide.

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The Reason Why So Many People Want to Eradicate Unborn Children with Down syndrome

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Why do so many in our culture want to eliminate unborn children with disabilities such as Down syndrome? On March 9th, the deputy editorial page editor of the Washington Post, Ruth Marcus, wrote an article entitled, " I would've aborted a fetus with Down syndrome. Women need that right."

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Parents needs to devote mot of their time to their child with down syndrome. Some people feel they would be constrained by the time that they need to be the child.

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According to the US Department of Agriculture, it takes $240,00 to raise the child with Down Syndrome.
Special Support

Speech Therapy: between $125-180 per hour ($6,500 annually)

Occupational Therapy: about $100 per hour ($5,000 annually)

Behavioral Therapy: about $75 per hour, at least 3 hours per week (upwards of $10,000+ annually)

Life Skills Therapy: about $80 per hour, once per week ($4,000 annually)

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The Cost of Raising a Child With Special Needs

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One mom shares what it takes financially

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Lauren Potter: An American actor who is a famous for playing in "Glee."
Chris Bruke: An American actor who is famous for playing in "Life Goes on."

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Today is World Down Syndrome Day, an international platform for Down syndrome awareness. According to Down Syndrome International, today can, "Help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities." Not only did the organization help make World Down Syndrome Day officially recognized by the United Nations in 2012, they have also created a huge online presence, including this year's Lots of Socks campaign, which help connect and inform people all around the globe.

Down syndrome is a condition in which an individual is born with an extra chromosome (number 21 to be specific, thus why it's celebrated on 3/21) - as defined by the National Down Syndrome Sociey, "This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome." Such characteristics include, "[an] experience [of]cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses."

In honor of World Down Syndrome Day, take a moment to recognize the many talents our favorite actors and celebrities with Down syndrome, and those who advocate for Down syndrome, as well. Enjoy!

Actors

Lauren Potter

There are few people who can stand up to one Sue Sylvester on Fox's hit show Glee - one of those people is Becky Jackson who is played by the hilarious Lauren Potter. Check our her powerful PSA with co-star Jane Lynch about ending the use of the "R-word."

Luke Zimmerman

He's been acting for nearly his entire life, but had his big break-out role in 2007 when co-starred in the ABC Family series The Secret Life of the American Teenager as Tom Bowman, Grace's adopted older brother. He also guest-starred on Glee in the 2013 episode "Movin' Out."

Jamie Brewer

You know her as Nan on American Horror Story: Coven. Her powers in clarvoyance are so strong that she's caught the attention of the Supreme. She may be underestimated by her fellow witches, but it only helps her character move up the ranks faster.

Tommy Jessop

Jessop is one of the stars of BBC Three's Growing Up Down's. The documentary follows three actors with Down Syndrome as their Blue Apple Theatre Company works to produce one of Shakespeare's most challenging plays, Hamlet. Jessop has also starred alongside Nicholas Hoult in Coming Down the Mountain and has worked regularly in British TV since 2007. Check out a clip of his incredible performance as Hamlet:

Chris Burke

Burke serves as the National Down Syndrome Society's Goodwill Ambassador and is best known as Corcky Thacher from ABC's Life Goes On. Burkes long career in Hollywood includes roles in films like Mona Lisa Smile and TV series such as ER and Touched by an Angel. He has traveled all around the world representing NDSS since 1994 and has used his celebrity to raise awarenedd and increase education and outreach about Down syndrome.

Edward Barbanell

Barbanell is the scene-stealing funnyman from the comedies The Ringer, Workahiolics, and The New Normal. And as close friends with Johnny Knoxville (who is also an advocate for people with Down Syndrome), he's even braved the world of Jackass 3D.

John Taylor

Taylor (Far Left) can be seen alongside Barbanell and Knoxville in The Ringer and Jackass 3D. He also co-starred in the indie hit Dorian Blues. The Ringer came up against some criticism for its representation of people with intellectual disabilities, however, Taylor and Barbanell stood by the project.

Advocates

Eva Longoria

As the actress puts it herself, "I was blessed with a sister who has special needs. Now, I work to impact the lives of similar young adults nationwide." Her organization Eva's Heroes works to enrich the lives of individuals with intellectual special needs and provides a community full of activities and programs all year long.

Sharon Stone

In 2011 Sharon Stone spoke at the National Down Syndrome Society's Annual Luncheon for which she helped to raise more than $100,000.

Jamie Foxx

The multi-faceted actor and musician has been a longtime supporter of the Global Down Syndrome Foundation as his DeOndra is a person with Down syndrome. He's done so much for the Foundation that he was awarded the Quincy Jones Exceptional Advocacy Award in 2012.

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7 Stars with Down Syndrome & Celebrity Advocates Who Support the Cause

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Today is World Down Syndrome Day, an international platform for Down syndrome awareness. According to Down Syndrome International, today can, "Help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities."

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Judith Scott: An American fiber sculptor.

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Judith Scott was a visual artist isolated from outside influences as a result of the impact of deafness and Down's syndrome. She was independent and self-directed. In the eighteen years Judith made her work she never repeated a form or color scheme. Crafting armatures of bamboo slats and discarded materials, Judith diligently wrapped each work with lengths of knotted cloth or yarn. The artist was introduced to fiber art in 1987 by artist Sylvia Seventy at Creative Growth and produced a remarkable, breathtaking body of mixed media sculptures. Roger Cardinal and John MacGregor, internationally known scholars and experts in the field, have both designated Judith an "Outsider artist" as her sculptures reflect little cultural input and are highly individualistic, reflecting Judith's own unique personal vision. Judith's work is in the permanent collections of the Museum of Modern Art, New York, the San Francisco Museum of Modern Art, Collection de l'Art Brut, Switzerland, The American Folk Art Museum, New York, the Museum of Everything, London. Most recently, from October 2014 through March 2015, The Brooklyn Museum, New York, exhibited the first comprehensive retrospective of her work.

Born in Columbus, OH, 1943 - 2005.

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Judith Scott - Creative Growth Art Center

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Judith Scott was a visual artist isolated from outside influences as a result of the impact of deafness and Down's syndrome. She was independent and self-directed. In the eighteen years Judith made her work she never repeated a form or color scheme.

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Shoko Kanazawa: A Japanese calligraphy.

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In a calligraphy studio on the outskirts of Tokyo, Shoko Kanazawa-dressed in white tabi, black hakama, and a cornsilk-colored kimono with circular flower patterns-stands before a four-foot-square expanse of paper and folds her hands in prayer.

For a few moments, a stillness falls over the studio. Then, smoothing out her kimono and hakama, Shoko picks up an enormous calligraphy brush, some three feet long, and plunges it into a bright red lacquered bucket filled a third of the way full with thick, raven-colored ink. Without a hint of indecision, she stabs the giant brush on the paper, pulling it towards her, picking it back up again, drawing it across the page, resting briefly halfway through, and finally putting the last flourish on the last stroke of the Chinese character which she has chosen for the new year.

Hikari. "Light."

It takes just a minute or two for Shoko to write the six-stroke character. During this time, she is intensely focused on the task at hand. Her mother-also her teacher-kneels beside the work in progress, sopping up over-inked areas with smaller rectangles of paper and reminding Kanazawa to watch her technique, to pause where strokes should be thicker, to breathe.
The Artist as a Young Woman
This artist in intense concentration is a far cry from the Kanazawa whom we met just half an hour earlier, when we arrived at the studio and were taken to the home upstairs to meet her. After greeting us in English, she noticed the microphone we had brought for our interview, and asked if we would like to record her singing and dancing like her favorite YouTube stars. Gleefully swaying back and forth, Shoko beatboxed and moved to the rhythm she made, hamming for the camera and then ending her impromptu performance with a tremendous smile.

As Shoko listed for us the stable of Youtubers she admires, and gushed about Michael Jackson and how much she loves his dance moves, it was easy to forget that Kanazawa Shoko is arguably the most famous living calligrapher in Japan.
World-Famous
Shoko Kanazawa has made more than 1,000 exhibitions and other public appearances in the past decade. Her work has hung in virtually every major temple and shrine in Ise, Nara, Kyoto, Kamakura, Tokyo, and beyond. There are four museums dedicated exclusively to her calligraphy, one of them located next door to the Higashi-Honganji, the enormous wooden temple in the heart of Kyoto. The Emperor and Empress of Japan hold Shoko's work in their private collection. Her calligraphy has adorned the opening titles to a major NHK period drama. She has won the praise of the most discerning critics in the country, and the hearts of the Japanese people.

Not only is Shoko Kanazawa the most famous calligrapher in Japan, she may even be the most famous calligrapher in the world. She is regularly featured in major media outlets worldwide. She has spoken at the United Nations headquarters in New York. Hers is perhaps the only contemporary calligraphy which those outside of specialist circles might recognize.
Untouched by Fame
And yet Shoko herself, when asked about her remarkable career, is unaware that she is a world-famous artist. She tells us about how much fun it was to sing karaoke with the family of a Buddhist monk once. (The monk is the abbot of a temple in Shikoku which was built specifically to house a more-than-dozen-yard calligraphic installation, possibly the first time in Japanese history that a temple was constructed around a work of calligraphy.) She invites us to sample the Chinese cuisine that she so loves to prepare. On a short walk around the neighborhood, she politely greets the many people who stop to say hello to her.

During our interview, we ask her about how she sees herself. In almost every newspaper article and television appearance, Shoko is introduced as having Down Syndrome. Indeed, Shoko may be, not only the world's most famous calligrapher, but also the world's most famous Down Syndrome person. Is there a gap, we ask her, between the way she is presented and the way she feels inside?

Shoko is puzzled by the question. We glance at her mother sitting beside her, who asks Shoko what Down Syndrome is.

"Sometimes babies have Down Syndrome," Shoko answers. We quickly move on to a different set of questions.

Later, after Shoko has left to change out of her formal kimono, her mother explains that Shoko does not know that she has Down Syndrome. It does not enter her mind.
Why 'Light'?
Earlier, we had asked Shoko why she chose the character, "light," for her new year's calligraphy.

"Because I want everyone to shine brightly in the new year," she explained.

"She is pure, untouched by the world," Shoko's mother afterwards told us. "The world sees her as a Down Syndrome person. But Shoko just wants to make other people happy."

Shoko Kanazawa has provided a special new year greeting for JAPAN Forward readers:

"Happy new year to everyone reading JAPAN Forward! I chose to write the word 'light' for you because my wish is that you will all shine brightly in 2018. I hope the year ahead will be happy for everyone!"
(To be continued)

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Down Syndrome Calligrapher Shoko Kanazawa Brings "Light" to Japan and the World | JAPAN Forward

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In a calligraphy studio on the outskirts of Tokyo, Shoko Kanazawa-dressed in white tabi, black hakama, and a cornsilk-colored kimono with circular flower patterns-stands before a four-foot-square expanse of paper and folds her hands in prayer. For a few moments, a stillness falls over the studio.

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Attempt to erase a category of people   

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Attempt to erase a category of people   

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In Iceland, the government or the society is categorized people with Down Syndrome. This classification allows women to let the abortion easily.  If you start differentiating the others from you, it means that you have stepped on the begging of the genocide. According to Gregory Stanton, the genocide begins with classification people who the society thinks that they are less valuable than the us.

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Iceland must be pleased that it is close to success in its program of genocide, but before congratulating that nation on its final solution to the Down syndrome problem, perhaps it might answer a question: What is this problem? To help understand why some people might ask this question, meet two children. One is Agusta, age 8, a citizen of Iceland. The other is Lucas, age 1, an American citizen in Dalton, Ga., who recently was selected to be 2018 "Spokesbaby" for the Gerber baby food company. They are two examples of the problem.

Now, before Iceland becomes snippy about the description of what it is doing, let us all try to think calmly about genocide, without getting judgmental about it. It is simply the deliberate, systematic attempt to erase a category of people. So, what one thinks about a genocide depends on what one thinks about the category involved. In Iceland's case, the category is people with Down syndrome.

This is a congenital condition resulting from a chromosomal abnormality. It involves varying degrees of mental retardation (although probably not larger variances than exist between the mental capabilities of many people who are chromosomally normal - say, Isaac Newton and some people you know). It also involves some physical abnormalities (including low muscle tone, small stature, flatness of the back of the head, an upward slant to the eyes) and some increased health risks (of heart defects, childhood leukemia and Alzheimer's disease). Average life expectancy is now around 60 years, up from around 25 years four decades ago, when many Down syndrome people were institutionalized or otherwise isolated, denied education and other stimulation, and generally not treated as people.

Highly (almost but not perfectly) accurate prenatal screening tests can reveal Down syndrome in utero. The expectant couple can then decide to extinguish the fetus and try again for a normal child who might be less trouble, at least until he or she is an adolescent with hormonal turbulence and a driver's license.

In Iceland, upward of 85 percent of pregnant women opt for the prenatal testing, which has produced a Down syndrome elimination rate approaching 100 percent. Agusta was one of only three Down syndrome babies born there in 2009. Iceland could have moved one-third of the way to its goal if only Agusta had been detected and eliminated. Agusta's mother is glad the screening failed in her case.

An Iceland geneticist says "we have basically eradicated" Down syndrome people, but regrets what he considers "heavy-handed genetic counseling" that is influencing "decisions that are not medical, in a way." One Icelandic counselor "counsels" mothers as follows: "This is your life. You have the right to choose how your life will look like." She says, "We don't look at abortion as a murder. We look at it as a thing that we ended." Which makes Agusta and Lucas "things" that were not "ended."

Because Iceland's population is only about 340,000, the problem (again, see the photos of problem Agusta and problem Lucas) is more manageable there than in, say, the United Kingdom. It has approximately 40,000 Down syndrome citizens, many of whom were conceived before the development of effective search-and-destroy technologies. About 750 British Down syndrome babies are born each year, but 90 percent of women who learn that their child will have - actually, that their child does have - Down syndrome have an abortion. In Denmark the elimination rate is 98 percent.

America, where 19 percent of all pregnancies are aborted, is playing catch-up in the Down syndrome elimination sweepstakes (elimination rate of 67 percent, 1995-2011). So is France (77 percent), which seems determined to do better. In 2016, a French court ruled that it would be "inappropriate" for French television to run a 2½-minute video ("Dear Future Mom") released for World Down Syndrome Day, which seeks to assure women carrying Down syndrome babies that their babies can lead happy lives, a conclusion resoundingly confirmed in a 2011 study " Self-perceptions from people with Down syndrome." The court said the video is "likely to disturb the conscience of women" who aborted Down syndrome children.

So, photos of Agusta and Lucas are probably "inappropriate." It speaks volumes about today's moral confusions that this - the disruption of an unethical complacency - is the real "Down syndrome problem."

Read more from George F. Will's archive or follow him on Facebook.

Read more on this topic:

Ruth Marcus: I would've aborted a fetus with Down syndome. Women need that right.

Marc A. Thiessen: When will we stop killing humans with Down syndrome?

Rachel E. Adams: My son with Down syndrome is not a mascot for abortion restrictions

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Opinion | The real Down syndrome problem: Accepting genocide

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Iceland must be pleased that it is close to success in its program of genocide, but before congratulating that nation on its final solution to the Down syndrome problem, perhaps it might answer a question: What is this problem? To help understand why some people might ask this question, meet two children.

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Nazi Germany wants to create country with beautiful people which is based on Germans' biased perspective. Fortunately, Nazi Germany is not able to see the beauty in disability people, so, they kill Jews and disabilities. Don't be like Nazi. Think and see the beauty of each person from their minds. Do not be depend on facial expression.

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Abstract

Although the Nazi genocide of Jews during World War II is well known, the concurrent Nazi genocide of psychiatric patients is much less widely known. An attempt was made to estimate the number of individuals with schizophrenia who were sterilized and murdered by the Nazis and to assess the effect on the subsequent prevalence and incidence of this disease. It is estimated that between 220 000 and 269 500 individuals with schizophrenia were sterilized or killed. This total represents between 73% and 100% of all individuals with schizophrenia living in Germany between 1939 and 1945. Postwar studies of the prevalence of schizophrenia in Germany reported low rates, as expected. However, postwar rates of the incidence of schizophrenia in Germany were unexpectedly high. The Nazi genocide of psychiatric patients was the greatest criminal act in the history of psychiatry. It was also based on what are now known to be erroneous genetic theories and had no apparent long-term effect on the subsequent incidence of schizophrenia.

Keywords: schizophrenia, psychosis, genocide

Introduction

The anti-Semitic horror of the German Third Reich has been extensively chronicled. In The War Against the Jews: 1933-1945, eg, Dawidowicz detailed the appalling annihilation of 6 million Jews, two-thirds of the entire European Jewry. Much less well known is the German genocide of other groups, including gypsies, homosexuals, and individuals with physical deformities, mental retardation, and serious psychiatric disorders, especially schizophrenia. This article will use published data to summarize what is known about the sterilization and killing of individuals with schizophrenia. It will then ascertain what effect, if any, these actions had on the subsequent prevalence and incidence of schizophrenia in Germany.

Background

The systematic sterilization and killing of individuals with schizophrenia in Nazi Germany from 1934 to 1945 was influenced by several factors. Perhaps, of greatest importance was a belief that schizophrenia was a simple Mendelian inherited disease, passed down from generation to generation. In Germany, this theory was promoted by Drs Ernst Rüdin and Franz Kallmann, among others. Rüdin, whose research was supported by the Rockefeller Foundation, was the director of the Genealogical-Demographic Department of the German Institute for Psychiatric Research in Munich. He had a special interest in schizophrenia, which he believed was caused by a Mendelian recessive gene, and advocated that "people who are themselves mentally ill ...should not have children." Kallmann, a Berlin psychiatrist who had been a student of Rüdin, studied schizophrenia in twins and also believed that the disease was transmitted by a recessive gene. In a 1935 speech, Kallmann advocated the examination of all relatives of individuals with schizophrenia to identify nonaffected carriers, which he believed could be done by noting "minor anomalies," and then the compulsory sterilization of such individuals. A year later, Kallmann emigrated to New York, where he continued his twin research and later became one of the founders of the American Society of Human Genetics.

The theories of Ernst Rüdin and Franz Kallmann coincided with a growing interest in Germany in eugenics and "race hygiene" ( Rassenhygiene) in the early 1930s. At the time, the eugenics movement was strongest in the United States and Britain. Indiana had passed the first state compulsory sterilization law in 1907, and by 1928, 20 more states had followed, most including "lunatics" among the target population; California was the most active state in this regard. In 1916, New York patrician Madison Grant had published The Passing of the Great Race, a jeremiad about the dangers of interracial marriage that Science magazine called "a work of solid merit"; it was subsequently translated into German and cited by Hitler in Mein Kampf. The International Congress of Eugenics was also based in the United States, and in 1932, its presidency passed from Dr C. B. Davenport of Cold Spring Harbor Laboratory to Dr Rüdin.

In 1933, Rüdin was one of the guiding forces behind the passage of Germany's first compulsory sterilization law, called "the law for the prevention of progeny with hereditary defects." Its initial target was individuals with mental retardation, schizophrenia, manic-depressive disorder, epilepsy, Huntington chorea, hereditary blindness and deafness, hereditary alcoholism, and "grave bodily malformation." Hitler had become chancellor 6 months earlier. The majority of the targeted individuals were in psychiatric hospitals, which had become massively overcrowded, thereby forcing the discharge of some patients to make room for more admissions. Patients with schizophrenia who were scheduled for discharge were deemed to be of high priority for sterilization in order to prevent them from producing offspring.

This massive increase in patients in psychiatric hospitals came at a bad time for Germany economically. Following World War I, Germany had been stripped of valuable industrial and coal-producing areas and saddled with onerous reparations. The decade following was marked by strikes, clashes between Communists and nationalists, inflation, bankruptcies, and a severe economic depression. Funding for psychiatric care was sharply reduced even as the number of patients requiring care was rising. In 1931, the German Psychiatric Association organized a prize for the best essay on the topic "How can provision for mental health care be more cheaply reorganized?"

The idea of killing the patients in psychiatric hospitals first surfaced prominently in 1920 in a publication by Karl Binding, a lawyer, and Alfred Hoche, a psychiatrist. Entitled Permission for the Destruction of Life Unworthy of Life, the tract posed the question: "Is there human life which has so far forfeited the character of something entitled to enjoy the protection of the law, that its prolongation represents a perpetual loss of value, both for its bearer and for society as a whole?" The authors' answer was clearly affirmative and described such individuals as being "mentally dead" and "on an intellectual level which we only encounter way down in the animal kingdom." The authors emphasized the economic burden of such individuals to Germany. The economic argument was repeated in subsequent discussions of this issue, such as in a 1932 article entitled "The Eradication of the Less Valuable from Society," in which the author, psychiatrist Berthold Kihn, estimated that mentally ill individuals were costing Germany 150 million Reichsmarks per year.

Hitler was interested in these ideas and is said to have discussed a program to kill chronic mental patients in 1933, shortly after assuming the chancellorship. He said that "it is right that the worthless lives of such creatures should be ended, and that this would result in certain savings in terms of hospitals, doctors and nursing staff." Prophetically, he suggested that such a program would be easier to implement during wartime, when public opposition would be less.

The idea of killing psychiatric patients continued to be discussed privately by Nazi officials throughout the 1930s. Finally, in July 1939, as he was planning to invade Poland, Hitler asked his private physician and other officials to draft a law that permitted the killing of mental patients. From the beginning, the euphemism "euthanasia" was used to refer to the killings; as Fredric Wertham noted in A Sign for Cain, "these were not mercy deaths but merciless murders."

The result was a memorandum on "the destruction of life unworthy of life" and a draft law that included the following provision:

The life of a person, who because of incurable mental illness requires permanent institutionalization and is not able to sustain an independent existence, may be prematurely terminated by medical measures in a painless and covert manner.

Selected professors of psychiatry and asylum directors who were known to be sympathetic to the plan were asked to comment on the draft. All agreed that such a program was necessary, but some suggested granting exceptions to patients who were doing "economically important work in the institution." Friedrich Mauz, professor of psychiatry at Königsberg University, argued against granting any exceptions for those individuals diagnosed with schizophrenia "as a matter of principle.",

Hitler's letter authorizing the program to kill mental patients was dated September 1, 1939, the day German forces invaded Poland. Although the program never officially became law, Hitler guaranteed legal immunity for everyone who took part in it. In October 1939, the directors of all German psychiatric hospitals were asked to fill out forms indicating the diagnosis and capacity for useful work of each patient, although they were not told what the forms were for. These forms were then assessed by a committee of selected psychiatrists who targeted approximately 70 000 patients for death, 1 for every 1000 people in Germany, which was the initial goal of the program. The program was known as Aktion (action) T-4, after the address of its headquarters in Berlin on Tiergartenstrasse 4.

Killing of Psychiatric Patients

The planning and logistics for such mass murder elicited much discussion. The method finally chosen was the release of carbon monoxide gas into a closed room outfitted to look like a shower room and the subsequent burning of the bodies in crematoria. Gold fillings were removed from the deceased and used to partially pay for the program. In early January 1940, the first 20 patients were led into a "shower room" at the Brandenburg asylum and killed. This method was judged to be highly successful and was later adapted for the killing of Jews. Five additional asylums, at Bernburg, Grafeneck, Hadamar, Hartheim, and Sonnenstein, were designated as killing centers, and patients marked for death at other hospitals were transported to these regional centers. By August 1941, 70 273 patients had been killed. Careful records were kept, and the 6 centers competed with each other in efficiency. Hadamar, eg, "celebrated the cremation of its ten-thousandth patient in a special ceremony, where everyone in attendance-secretaries, nurses and psychiatrists-received a bottle of beer for the occasion."

Once the initial goal of killing 70 000 patients was achieved, the Aktion T-4 program was halted. Although some resistance to the program had developed, especially among the churches and in communities near the killing centers, the T-4 program personnel were needed for a bigger job. Beginning in April 1941, selected personnel were transferred from the psychiatric hospitals to concentration camps and asked to set up similar killing facilities. According to Cleansing the Fatherland: Nazi Medicine and Racial Hygiene of Aly et al, "the original commandants of Belzec, Sobibor and Treblinka came from T-4 and were on its payroll." The German solution for its problem of chronic mental patients thus morphed into the "final solution" for its problem of Jews, gypsies, and others deemed undesirable.

Although the formal Aktion T-4 program was halted in mid-1941, the killing of mental patients continued throughout the war. In March 1945, Red Army troops even found a crematorium still under construction at one liberated mental asylum. Some psychiatrists were fully cooperative with the ongoing program, while others opposed it and tried to save patients by falsifying their records. In some cases, the killing was done using carbon monoxide, but in most cases it was done by injection (eg, morphine, phenobarbital, or scopolamine) or starvation. Psychiatric asylums implemented 2 diets: minimum calories for those who could work and a starvation diet of vegetables only for those who could not. These killing programs were highly effective. At the Hadamar asylum, eg, of the 4817 patients transferred there between August 1942 and March 1945, 4422, or 92%, died. At the Obrawalde asylum in German Sileasia, of the 3948 admissions in 1944, 3814, or 97%, died. Postwar investigators estimated that 18 232 people had died at Obrawalde alone in the previous 3 years.

According to Fredric Wertham, the mass sterilization and killing of psychiatric patients in Germany "was organized as well as any modern community psychiatry project, and better than most." At the Grafeneck asylum alone, 594 patients were killed in 133-day period, and "eventually the crematorium of Grafeneck smoked incessantly."

Estimates of Numbers Sterilized and Killed

What percentage of these had a diagnosis of schizophrenia? It is clear that individuals with this diagnosis were sterilized and killed disproportionately compared with individuals with other diagnoses. This was because of the strong belief among German psychiatrists that schizophrenia was genetically inherited and also because individuals with schizophrenia were less likely to have been able to work. According to Friedlander, the "overriding criterion" for selection for death in the T-4 program "was the ability to do productive work." The few patients who were still alive in German psychiatric asylums at the end of the war were those who could work or had useful skills, such as a patient, formerly a dentist, in the Obrawalde asylum "who was temporarily acting as asylum director" after the staff left before the advancing Russian army. Having schizophrenia put one in the category of those for whom there were no exceptions to sterilization or killing. Benno Müller-Hill, the author of Murderous Science, noted that "a German who was diagnosed 'schizophrenic' had to be sterilized without exception. Equally, a person who was diagnosed 'schizophrenic' and who was hospitalized for at least five years had a strong chance to be murdered in the euthanasia murders." Given the facts that 56% of hospitalized psychiatric patients in 1929 and two-thirds of admissions during the war had schizophrenia, it seems reasonable to estimate that at least half of the 200 000-275 000 patients killed or 100 000-137 500 individuals were so diagnosed.

Thus, in the 12-year period of 1934-1945, an estimated 600 000-675 000 individuals in Germany were sterilized or killed under medical rationalizations, including an estimated 132 000 with schizophrenia who were sterilized and 100 000-137 500 with schizophrenia who were killed. There would have been some overlap among these groups, but except for Jewish patients, it is not likely that it would have been extensive. The Germans kept careful records; because the goal of this program was to prevent reproduction and thus promote racial purity, killing an individual who had been previously sterilized would have been pointless. The exception to this was Jewish patients with schizophrenia, who appear to have been selectively killed whether or not they had been previously sterilized., It has been estimated that the total number of Jewish patients with schizophrenia who were killed was between 5000 and 7000.

Combining the estimated 132 000 individuals with schizophrenia who were sterilized and the estimated 100 000-137 500 individuals with schizophrenia who were killed, and allowing for a modest overlap, yields a total of 220 000-269 500 individuals with schizophrenia who were sterilized or killed. What percentage of all Germans with schizophrenia does this represent? As noted above, in late 1939, there were 283 000 patients in German psychiatric hospitals. A survey 10 years previous reported that 56% of the hospitalized patients were diagnosed with schizophrenia, a percentage consistent with data from other countries; if that was true in 1939, there would have been 158 480 patients with schizophrenia so hospitalized.

Immediately preceding the implementation of the sterilization program in 1934, there were also 3 studies of the prevalence of schizophrenia carried out in Germany. ⁻ They were done between 1929 and 1931 in predominantly rural areas of Thüringen and Bavaria in southeastern Germany by Carl Brugger, associated with the German Psychiatric Research Institute in Munich. Brugger used key informants, hospital records, and interviews of community residents to identify all individuals with psychiatric problems, including those in hospitals. He said that it was especially important to identify individuals with schizophrenia, which he believed was carried by a recessive gene. Citing Rüdin's work, Brugger said that "only sterilization ensures that the genes do not spread all over the nation." In the 3 studies, Brugger identified 93 individuals with schizophrenia, including an unspecified number who were hospitalized, among the total population of 46 189 people of all ages, for a point prevalence rate of 2.0 per 1000 population. This rate was consistent with other prevalence studies done in the 1930s, including a rate of 1.8 per 1000 in a study of rural Tennessee, 3.3 per 1000 in Denmark, 4.2 per 1000 in Finland, and 1-year prevalence rates of 2.3 and 2.9 per 1000 in 2 studies in Baltimore.

In 1939, the total population of Germany, including the eastern regions that subsequently became part of Poland, was approximately 70 million. If 2 cases of schizophrenia per 1000 population were representative of the entire country at that time, the total number of Germans with schizophrenia in 1939 would have been 140 000 individuals. However, Brugger's studies were carried out almost exclusively in rural areas, and it is known that urban schizophrenia prevalence rates are significantly higher than those in rural areas. In addition, new cases of schizophrenia continued to be diagnosed between 1940 and 1945. Most incidence studies reported in the postwar years around the world ranged between 10 and 30 new cases of schizophrenia per 100 000 population per year; however, as will be noted below, German incidence rates were higher.

Given the estimate of 158 400 individuals with schizophrenia in psychiatric hospitals; the 140 000 individuals with schizophrenia, including some of whom were hospitalized, identified in rural surveys; and new cases of schizophrenia diagnosed during the war years, it seems reasonable to estimate that between 1939 and 1945 there were at least 250 000, and perhaps as many as 300 000, individuals with schizophrenia in Germany. Because we have estimated that between 220 000 and 269 500 of them were sterilized or killed, this means that between 73% and 100% of individuals with schizophrenia in Nazi Germany shared this fate. This estimate is also consistent with the fact that the psychiatric hospital census in Germany in 1945 was only 14% of what it had been in 1939.

Postwar Studies

What effect, if any, did the sterilization and killing of individuals with schizophrenia have on the subsequent prevalence and incidence of this disorder in Germany? First, is this a legitimate question to ask? There is widespread agreement that the results of Nazi experiments carried out on individual prisoners, such as those on hypothermia, should not be published. The sterilization and murder of psychiatric patients was not such an experiment but rather was a policy applied to an entire population. As such, it is similar to other Nazi policies, such as the decision to blockade Holland in late 1944, leading to widespread starvation during the Dutch Hunger Winter of 1944-1945. Studies of the children who were in utero during this period have shown that they had an increased rate of developing schizophrenia. Looking at the effects of psychiatric genocide is similar, and in addition, all the prevalence and incidence studies associated with this question have already been published.

The first schizophrenia prevalence study carried out in Germany following World War II was done in 1971, 26 years after the last individuals with schizophrenia had been sterilized or killed. It covered 424 000 people in 3 counties in Bavaria, including Rosenheim, the site of one of Brugger's studies 40 years earlier. The authors reported a 6-month prevalence of 1.5 per 1000 total population, lower than the point prevalence rate of 2.0 per 1000 that had been reported by Brugger. Between 1975 and 1979, this same research group randomly sampled 1536 adults in Traunstein, one of the 3 counties they had studied previously. They reported a 6-month schizophrenia prevalence of 3.9 per 1000 for individuals aged 16 years and above. They reinterviewed the same individuals between 1980 and 1984 and reported a similar rate of 3.6 per 1000, point prevalence, for individuals aged 15 years and above. The authors noted that the schizophrenia prevalence rates in the German studies were lower than rates being reported in other postwar studies in Sweden, Norway, Iceland, and France, where the rates ranged between 6.0 and 10.0 per 1000, but they did not speculate on why that might be the case.

In addition to the Bavarian studies, beginning in 1974, Heinz Häfner and his colleagues carried out additional German schizophrenia prevalence studies in Mannheim, utilizing their case register. Between 1974 and 1980, they reported a 1-year schizophrenia prevalence rate of 2.3 per 1000. They also noted without comment that this rate was lower than the rates being reported in comparable schizophrenia prevalence studies in England (3.4 per 1000), the United States (4.7 and 5.1 per 1000), and Ireland (8.3 per 1000). The low German schizophrenia prevalence rates were also observed in a 2005 review by Saha et al of 188 schizophrenia prevalence studies published between 1965 and 2002. All these studies suggest that the prevalence of schizophrenia was relatively low in Germany following World War II, as would be expected due to the genocide.

Regarding the incidence of new cases of schizophrenia, no published studies were apparently carried out in Germany prior to World War II. The first postwar study was done in Mannheim in 1965, 20 years after the last patients had been sterilized or killed. Heinz Häfner and Helga Reimann at the University of Heidelberg identified all new cases of schizophrenia reported during the year among the city's 330 000 inhabitants. They reported an incidence rate of 53.6 per 100 000, which the authors noted was "more than twice as high as the mean of 21.8 per 100 000 calculated in 1965 by Dunham from different studies and two to three times as high as the rates of 23.8 or 15.8 respectively, ... for the U.S.A. and England and Wales in 1969." The German rate, they added, was comparable to the "rate of 52 per 100 000 given by Walsh for Dublin in 1969."

Häfner and his colleagues subsequently opened a psychiatric case register and recorded the incidence of schizophrenia for each year from 1974 to 1980; it ranged from 48 to 67 per 100 000, averaging 59. In one report, the authors compared the incidence of schizophrenia in Mannheim with 11 studies in the Netherlands, Italy, Denmark, Norway, Iceland, the United Kingdom, the United States, and Australia; the 11 studies averaged 24 per 100 000, less than half the incidence rate for Mannheim, and only one, a 1970 study in Rochester, NY, reported a higher rate than Mannheim. In another publication, Häfner compared the Mannheim incidence rate with that of 8 centers in the World Health Organization Determinants of Outcome Study; only 1 of the 8 centers had an incidence of narrowly defined schizophrenia exceeding that of Mannheim.

The other area in Germany where schizophrenia incidence studies were carried out was in Bavaria. A 1971 study found 102 cases in a predominantly rural population of 424 000 for a 6-month incidence rate of 24 per 100 000. Another study done in the same area in 1974-1975 reported an annual incidence rate of 48 per 100 000, thus being more similar to the rates reported for Mannheim. These high German incidence rates were also confirmed by international comparisons. For example, a review of 55 schizophrenia incidence studies by McGrath et al found the median schizophrenia incidence to be 15.2 (7.7-43.0) per 100 000; few of the studies achieved the high incidence rates reported in Germany.

Discussion

The sterilization and murder of hundreds of thousands of patients with schizophrenia and other psychiatric disorders in Nazi Germany between 1934 and 1945 was the greatest criminal act in the history of psychiatry. It was perpetrated in an attempt to decrease the incidence of schizophrenia and purify the race, based upon a mistaken belief that schizophrenia was a simple Mendelian inherited disease in which a single gene, or small number of genes, is sufficient to cause the disease. Furthermore, it should have been known even in 1940 that removing cases of schizophrenia from society would have no impact on the incidence of the disease because the vast majority of individuals with schizophrenia do not have a family history of the disease and do not reproduce. Current research suggests that the cause of schizophrenia involves dozens, and perhaps hundreds, of genes and includes common variants such as single nucleotide polymorphisms or less common variants such as copy number variations. Such variants may be carried by large numbers of people, most of whom never develop schizophrenia. It is possible that such genetic variations may cause disease only if they are activated by life experiences such as perinatal hypoxia, nutritional deficiency, infections, or other environmental factors.

Is there any apparent explanation for the relatively high incidence rates of schizophrenia in postwar Germany? One possible explanation is that the areas in which postwar incidence studies were carried out were less affected by the psychiatric genocide. This seems unlikely because many Bavarian psychiatrists enthusiastically supported the eugenics program, and individuals with schizophrenia in the Mannheim region were killed initially in Grafeneck and later in Hadamar asylum.

Another possible explanation is that postwar incidence studies of schizophrenia in Germany included large numbers of non-German immigrants. In fact, 13% of Mannheim's population in the 1970s were foreign workers. Studies of the incidence of schizophrenia among these workers, however, reported that "when corrected for age, the rates of treated schizophrenia episodes ... were significantly lower than those of the German population."

A third possibility is that much broader diagnostic criteria were being used to diagnose schizophrenia in Germany after the war compared with before the war. If this had been the case, one would expect to find high rates in prevalence as well as in incidence studies, but this is not the case. It is difficult to determine what diagnostic criteria were being used in prewar studies. Brugger did not define the diagnostic criteria he used in his 1929-1931 studies, but they were probably the classical criteria of Emil Kraepelin, who dominated diagnostic thinking in Munich psychiatry until his death in 1926. Most studies after the war used the diagnostic guidelines of the International Classification of Diseases, Eighth Revision ( ICD-8), and International Classification of Diseases, Ninth Revision ( ICD-9), introduced in 1965 and 1975, which use somewhat broader criteria for diagnosing schizophrenia. However, most of the other European studies that were being done at the time and that reported much lower incidence rates also used ICD-8 or ICD-9 criteria.

A fourth possibility is that social conditions during or after the war produced environmental factors that led to an increase in the incidence of schizophrenia. An example was the increase in schizophrenia in Holland that followed the Dutch Hunger Winter in 1944-1945. The cause of the high schizophrenia incidence rates in postwar Germany is thus not apparent and is an appropriate subject for additional research.

The major limitation of this article is the quality and quantity of the available data. In some cases, the projected numbers are merely informed guesses whose credibility rests upon their reasonableness and their consistency with other related data. It is hoped that this article will elicit additional, previously unpublished, data that can be used to document and memorialize this reprehensible but important chapter in psychiatric history. In addition, perhaps, the most appropriate response the profession of psychiatry can have to the Nazi eugenics and psychiatric genocide program is to focus additional resources on examining more complex forms of genetic and gene-environmental interactions in order to understand the true genetic contribution to schizophrenia. This knowledge should then be used to develop methods for disease prevention and treatment that can be used ethically in all populations.

Funding

Stanley Medical Research Institute.

Acknowledgments

We are grateful to Dr Sandra Dittmann and Ms Gabriele Chidichimo for assistance with translations of German articles, Dr Vishwajit Nimgaonkar for reviewing the article, and Ms Judy Miller for technical assistance. The authors declare that they have no conflicts of interest.

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10. Friedlander H. The Origins of Nazi Genocide. Chapel Hill, NC: University of North Carolina Press; 1995. 29, 61, 83, 91.

14. Brugger C. Versuch einer Geisteskrankenzählung in Thüringen. Z Gesamte Neurol Psychiatr. 1931;133:352-390.

15. Brugger C. Psychiatrische Ergebnisse einer medizinischen, anthroprologischen und soziologischen Bevökkerungsuntersuchung. Z Gesamte Neurol Psychiatr. 1933;146:489-524.

16. Brugger C. Psychiatrische Bestandesaufnahme im Gebiet eines medizinisch-anthropologischen Zensus in er Nähe von Rosenheim. Z Gesamte Neurol Psychiatr. 1937;160:189-207.

17. Yolles SF, Kramer M. Vital statistics. In: Bellak L, Loeb L, editors. The schizophrenic syndrome. New York, NY: Grune and Stratton; 1969. pp. 66-112.

18. McGrath J, Saha S, Welham J, El Saadi O, MacCauley C, Chant D. A systematic review of the incidence of schizophrenia: the distribution of rates and the influence of sex, urbanicity, migrant status and methodology. [ PMC free article] [ PubMed]

23. Saha S, Chant D, Welham J, McGrath J. A systematic review of the prevalence of schizophrenia. [ PMC free article] [ PubMed]

24. Häfner H, Reimann H. Spatial distribution of mental disorders in Mannheim, 1965. In: Hare EH, Wing JK, editors. Psychiatric Epidemiology: Proceedings of the International Symposium Held at Aberdeen University 22-5 July 1969. New York, NY: Oxford University Press; 1970. pp. 341-354.

26. Jablensky A. Epidemiologic surveys of mental health of geographically defined populations in Europe. In: Weissman MM, Myers JK, Ross CE, editors. Community Surveys of Psychiatric Disorders. New Brunswick, NJ: Rutgers University Press; 1986. pp. 257-313.

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Psychiatric Genocide: Nazi Attempts to Eradicate Schizophrenia

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Although the Nazi genocide of Jews during World War II is well known, the concurrent Nazi genocide of psychiatric patients is much less widely known. An attempt was made to estimate the number of individuals with schizophrenia who were sterilized and ...

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Once you allow the abortion because of Down Syndrome, it means that you look down their life. This is nothing different from dehumanization.

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Ever since 1928, Gerber Baby Foods has illustrated its products with a sketch of a beautiful child who was chosen after a nationwide contest. Beginning in 2012, Gerber supplemented its cherubic logo with an advertising campaign featuring an additional child, also chosen in an open competition.

This year, out of 140,000 submitted entries, Gerber chose a smiling two-year-old named Lucas. Last month, Gerber arranged for the two babies-the original 1928 Gerber baby and the 2018 Gerber baby-to meet.

This year's baby, Lucas, has Down syndrome. Lucas is happy. Lucas is lucky to be alive.

Estimates vary, but in the United States, abortions of children whose Down syndrome is detected in the womb are in the range of about 67 percent. The lethal discrimination practiced against such persons has become a worldwide phenomenon. Iceland has trumpeted its success in eliminating people with Down syndrome from the island. Denmark, whose people heroically saved over 95 percent of the Jews living there during World War II, now boasts that 98 percent of unborn children with the condition are aborted. Italy, Germany, France, Switzerland, England, and Belgium all have rates exceeding 90 percent.

Hitler wanted Europe to be juden rein, scrubbed clean of Jews. It seems that today Europe aspires to be Down S yndromerein.

Despite the fact that a majority of children with Down syndrome are aborted in the United States, each year about 6,000 babies with Down syndrome survive pregnancy and are born here. In Europe, the situation is more dismal. In England, about 700 are born each year. In 2017, only four children whose Down syndrome was detected in the womb were permitted to be born in Denmark. There are virtually none in Iceland.
Protecting Babies with Down Syndrome
Down syndrome, or trisomy 21, occurs when there is an extra copy of chromosome 21. It most often occurs in pregnancy of women who are over thirty-five years of age. Common effects of Down syndrome include a smaller stature, a slight flattening of the rear of the skull, slightly upward slanting eyes, a degree of mental retardation, and heart and eyesight problems. Life expectancy is now around sixty years. Just forty years ago, life expectancy was only twenty-five years, and in 1929, it was a mere nine years. In the main, Down syndrome children are happy and outgoing.

On December 22, 2017 Governor John Kasich of Ohio signed the Down Syndrome Non-Discrimination Act, which prohibits abortions of unborn children who have been diagnosed with Down syndrome. In March 2018, federal district judge Timothy Black, responding to a suit by the ACLU, issued a preliminary injunction preventing the Act from going into effect. Similar laws in Indiana and Louisiana have also been stayed, but a North Dakota law protecting unborn children with Down syndrome has taken effect.
The Humanity of the Unborn Child
For the last twenty years, in the United States, states have passed myriad statutes attesting to the humanity of the unborn person. In addition to Down syndrome laws, they include such measures as fetal homicide acts, born alive acts, pain-capable restrictions, ultrasound requirements, sex-selection prohibitions, twenty-week bans, informed consent laws, heartbeat bills, and counseling and adoption opportunities. The next stage in abortion jurisprudence will be to grapple with the central fact of the humanity of the unborn person, to which all of these statutes attest.

In 1948, in reaction to the crimes against humanity perpetrated by the National Socialist regime in Germany, the Universal Declaration of Humans Rights was adopted. Drafted by men such as personalist philosopher Jacques Maritain, the Declaration had a basis in natural law. In the same year, the Genocide Convention was adopted. It seems that seventy years later, Europe and North America have circled back to the time when eugenics sought the sterilization or eradication of certain kinds of human beings. Because of the ideology of abortion, we have now traveled the road from termination of the pregnancy to the extermination of the kind of human being we no longer wish to abide in our midst.

The abortion decision is no longer just that baleful utilitarian calculus, "In order to enhance my life's prospects, I must utterly destroy your life's prospects." It is now, "You may not live, because of who you are." Recall that the first group Hitler sought to destroy was gay people-because of who they were. In China, girls are aborted-because of who they are. In Rwanda, the Tutsis were slaughtered-because of who they were. In America, we have something called pregnancy reduction-a euphemism-when one of twins or triplets is aborted, usually because he or she is smaller than the other. You're short-you go.

With Down syndrome, as the columnist George Will has written, "it is simply the deliberate systematic attempt to erase a category of people." In other words, it is a form of genocide. It goes beyond eugenics, for Down syndrome people rarely reproduce.
What Gives Someone the Right to Live?
When we tolerate the killing of people simply because of who they are, we lose our own moral standing to exist. Recall what Abraham Lincoln wrote about the justifications offered in defense of slavery.

You say A. is white, and B. is black. It is color, then; the lighter, having the right to enslave the darker? Take care. By this rule, you are to be slave to the first man you meet, with a fairer skin than your own.

You do not mean color exactly?-You mean the whites are intellectually the superiors of the blacks, and, therefore have the right to enslave them? Take care again. By this rule, you are to be slave to the first man you meet with an intellect superior to your own.

But, say you, it is a question of interest; and, if you can make it your interest, you have the right to enslave another. Very well. And if he can make it his interest, he has the right to enslave you.

Do you lose your right to life because of who you are? Because you are gay, or a girl, or a Tutsi, or black, or a Jew, or a Christian, or have an extra chromosome?

Does a person lose his right to live because of his geography? Did a person lose his right to live in Mao's China because of where he was? Would he have retained that human right had he been in Taiwan? Does a person not have a right to live because he is a few centimeters inside the birth canal and then gain it when he is a few centimeters outside of it?

Is it time? Did a persecuted Jew during the anti-Jewish period in the Soviet Union have no right to live during the waiting period of his six-month exit visa? Did he then possess that right when he finally exited the country? Does a child six months away from delivery have any less a right to live than one who is just born?

Is it power? Does a citizen of North Korea have no right to live because Kim Jong-un can kill him at will, while a citizen of England has a right to live because Theresa May cannot? Does a child in the womb not have a right to live simply because someone else has the power to end her life?

During the mass starvation in Ukraine caused by the Soviet government, Joseph Stalin was quoted as having said, "If only one man dies of hunger, that is a tragedy. If millions die, that's only statistics. " That glib comment is callously wrong. Ukraine's millions of famine-induced deaths weren't a statistic. They were a moral catastrophe. The mass extermination of unborn children today is likewise a moral catastrophe. Every year, we track the statistics on abortion. But behind each one of the twenty million or more deaths under Stalin, there was an individual person. Behind each one of the abortion statistics, there is an individual human person, unique, just like you and me, with a life, just like yours and mine, never to be replicated-for all time.

Just like Lucas.

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From Termination to Extermination: The International Down Syndrome Genocide

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Ever since 1928, Gerber Baby Foods has illustrated its products with a sketch of a beautiful child who was chosen after a nationwide contest. Beginning in 2012, Gerber supplemented its cherubic logo with an advertising campaign featuring an additional child, also chosen in an open competition.

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Sally Phillips, who has a kid with Down Syndrome, describes life in her family as "just slightly funnier than in other families," thanks to Olly, who is now 12 and goes to a mainstream secondary school.

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Ninety per cent of people in the UK who know their child will be born with Down's syndrome have an abortion - so there are concerns a new, highly accurate test to identify babies with the condition, will lead to even more terminations.

"The doctor said to us: 'I'm sorry, I'm so sorry.' The nurse on duty cried. I don't think anyone said anything at all positive," says Sally Phillips. "It wouldn't have been any different if they'd told me my child wasn't going to make it."

Her son, Olly, was 10 days old, when he was tested for Down's syndrome - the results came back positive. But Phillips - the actress and screenwriter best known for her roles in Miranda and Bridget Jones - found life with a child with Down's syndrome was not what the hushed tones and apologies had led her to expect

"I was told it was a tragedy and actually it's a comedy. It's like a sitcom where something appears to go wrong but there's nothing bad at the end of it."

She describes life in her family as "just slightly funnier than in other families," thanks to Olly, who is now 12 and goes to a mainstream secondary school. She also has two younger children, neither of whom have Down's.

"Having Olly in my life has changed me and my family for the better. He has slightly worse impulse control but that means that it's very funny because he's often saying exactly what everybody's thinking but is too shy to say.

"He's also incredibly caring. He's the only one of my three kids who every single day will ask me how my day was. He's really kind. He's really focused on other people. He's really gifted emotionally. He'll notice if people are upset when I won't."

Find out more

Sally Phillips explores the issues around the new prenatal test in A World Without Down's Syndrome at 21:00 on Wednesday 5 October on BBC Two.

In the UK, about 750 babies are born with Down's syndrome every year and there are an estimated 40,000 people in the country living with the condition.

Most people have 23 pairs of chromosomes, but people with Down's have an extra copy of chromosome 21, which means they develop differently and have varying levels of learning disability. Some children with Down's have few health problems, but certain medical complications - such as heart, gut, hearing, or thyroid conditions - are more common in people with Down's.

The current NHS screening, which is offered to all pregnant women, gives an indication of the likelihood that a baby will have Down's. If the foetus has the condition, there is an 85% to 90% chance that the existing test will pick it up, but about 2.5% of positive results are false and these babies don't have Down's.

At the moment, the next step is amniocentesis or CVS (chorionic villus sampling), the only diagnostic tests that can definitively show whether a baby has Down's syndrome. Both of these tests are invasive - a needle is used to take a sample of the fluid surrounding the baby or cells from the placenta - and come with a risk of miscarriage. It's a risk some women are not willing to take.

This is where NIPT - the new non-invasive prenatal blood test - comes in. It could soon be offered to women as an extra, second step in the screening process. It is 99% accurate and carries no risk of miscarriage.

So the false positives will be identified earlier and fewer invasive tests carried out.

That sounds good - but some people, including Sally Phillips, worry it will mean that more foetuses with Down's will be identified and aborted.

NIPT is already available in private clinics. One woman in her 20s who used it to find out that her baby had Down's syndrome met up with Phillips to talk about her experience.

After a positive NIPT test she went ahead with an invasive test which confirmed the result.

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

It was her first pregnancy. Unsure of what life for the child would be like, she and her partner did some research online looking at news reports, videos of people with Down's and support group websites.

"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," she says. They found a lot of positive and inspirational testimonies, but some were troubling.

"There were blogs by mums so you see some of the difficulties that 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," she says.

"If my child was affected as much as he was I would feel really guilty about that having been given the choice. Even the best case scenario isn't what I want for my son."

So she and her partner decided to end the pregnancy. "We felt that was the best thing for the baby," she says.

For Phillips it can be difficult to accept that someone doesn't want a child like hers.

And she is worried that her son will grow up in a world where more parents choose not to give birth to babies diagnosed with the condition. She gives the example of Iceland, where almost everyone screens for Down's and 100% of women who have a positive diagnosis now terminate.

Icelandic photographer Sigga Ella, whose aunt had the condition, took a series of portraits of people with Down's to raise awareness of the Down's community there.

But in the UK about a third of pregnant women opt out of screening, so if that remains the case, any of these babies who have Down's will continue to go undetected until they are born.

In the UK the new test is being developed by Lyn Chitty at Great Ormond Street Hospital - professor of genetics and foetal medicine.

She carried out a study to see what women do when they are offered NIPT. Based on this research she believes that an extra 195 babies with Down's could be diagnosed in England and Wales each year before birth.

But even though 90% of women in the UK with a positive Down's diagnosis have abortions, she doesn't believe it means most of these 195 pregnancies will be terminated.

"I really do not think that we are going to be screening out Down's syndrome," she says. "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.

"The trouble is everybody's looking at hypothetical scenarios, they're looking at 'what if' situations.

"We found that a lot of women were using the NIPT test to find out whether their baby's got Down's syndrome, inform themselves and carry on with the pregnancy. If you look at our statistics it will not significantly change the live birth rate."

The statistics relating to terminations are complex and interpreted differently by each side of the debate. But all experts agree that the way a diagnosis of Down's syndrome is presented can influence whether parents choose to continue with the pregnancy.

"The whole essence of a good screening programme is the counselling you have before you even have the blood test done or the scan done," says Alan Cameron, foetal medicine consultant at Queen Elizabeth Hospital in Glasgow.

"You've got to be given an educated choice, but certainly my experience is that much fewer women would terminate now than they ever did before because I think things are better... people see Down's kids having good, healthy, lives, working in the community, you see kids around with Down's syndrome that are doing a good job."

In the early 1980s life expectancy for a child born with Down's was 25 years, but today it's about 60, with some living into their 70s. And a report published in 2014 shows how employers can benefit from hiring staff with Down's.

Screening has never been a case of "let's try and eradicate Down's syndrome from the population," says Cameron. "That's never been the mission... It was all on the back of women's choice."

He admits, though, that while medics have long considered the ethics and consequences of screening among themselves, they haven't been very good at discussing this with their patients and the public.

This is where the Nuffield Council on Bioethics comes in. While the government gets ready to announce the roll-out of NIPT across the NHS, the council has been speaking to scientists, doctors, policy makers, people with Down's and their families to assess what impact it could have.

Ultimately you could have whole genome sequencing so you could test that sample for everything
Tom Shakespeare, Nuffield Council on Bioethics

"There has been screening for Down's Syndrome for decades, so in terms of the enterprise of offering women informed choice NIPT doesn't really change that," says Tom Shakespeare, chairman of the Nuffield working group, which plans to publish its report in February.

But it does open the door to testing for other conditions.

"It could be used by people who have a single gene condition, like cystic fibrosis or muscular dystrophy or achondroplasia - my own condition," he says.

"Ultimately you could have whole genome sequencing so you could test that sample for everything - it's the next step and because NIPT is non-invasive you're not going to risk the foetus."

And for him, like Sally Phillips, it comes back to how results and information are given to prospective parents.

"I support the option of screening for those that want it but it needs to be on the basis of good quality information - why are prospective parents not being given the full information about Down's syndrome?"

"It's not just about trisomy 21 (Down's syndrome) or risk of intellectual disability - it's also about what are people's lives like? What barriers do they face? Do they suffer? If you're potentially having a baby with a condition, that's what you want to know - how will it affect my family? How will it affect my child? How will it affect their life? How much of a problem is it?"

These are questions the new blood test is not able to answer.
Karen Gaffney is a 38 year-old American woman with Down's syndrome. Last year she gave a TED talk on why her life matters. This is an edited version of her speech - you can watch the full version here.
I would like to start by telling you about my fifth grade teacher. It was her first year of teaching when I showed up in her class. She didn't know anything about Down syndrome but that didn't matter, because she knew I wanted to learn, and she wanted to teach. She and I have stayed in touch. A few years ago, I got a special letter from her - she told me that she was pregnant and she needed my help, because her baby would be born with Down syndrome!

She pushed back on any discussion of termination because she knew Down syndrome from a completely different perspective than her doctor did. She taught him about her fifth grade student... me!

There was a time when people like me were institutionalised. When I was born, the doctor predicted that I would be lucky to be able to tie my own shoes or write my own name - he forgot to mention the part about me swimming the English Channel.

We have begun to see more and more young people with Down syndrome graduating from high schools, some going on to higher education and learning employable skills. There are accomplished musicians, artists, golfers, models, actors and public speakers, as well as good employees making significant contributions to their companies and communities. These are all role models for what can be done in spite of one extra chromosome.

It's far from perfect, though, breakthroughs haven't come for everyone and we still have battles to fight for inclusion.

And it seems the race is on to find newer, faster ways to test for that extra chromosome before birth - the problem is without timely and accurate information, about all our progress, if the test shows an extra chromosome, pregnancies are being terminated. We have those who say we shouldn't even be born at all.

I believe Down syndrome is a life worth saying yes to. Every life matters regardless of the number of chromosomes we have.

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Ninety per cent of people in the UK who know their child will be born with Down's syndrome have an abortion - so there are concerns a new, highly accurate test to identify babies with the condition, will lead to even more terminations. "The doctor said to us: 'I'm sorry, I'm so sorry.'

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High Percentage of Positive Feed Back about life of DS

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High Percentage of Positive Feed Back about life of DS

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99 percent said they were happy with their lives

97 percent liked who they are

96 percent liked how they look

86 percent indicated they could make friends easily

Only 4 percent expressed sadness about their life

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Why do so many in our culture want to eliminate unborn children with disabilities such as Down syndrome? On March 9th, the deputy editorial page editor of the Washington Post, Ruth Marcus, wrote an article entitled, " I would've aborted a fetus with Down syndrome. Women need that right." When parents of children with Down syndrome strongly criticized her argument, she doubled down on her position by writing a subsequent article entitled, "The silenced majority of women who would abort a fetus with Down syndrome." Marcus insisted that she is part of the majority of women who believe that abortion is better than bringing a child with Down syndrome into the world. From her first article:

I respect - I admire - families that knowingly welcome a baby with Down syndrome into their lives. Certainly, to be a parent is to take the risks that accompany parenting; you love your child for who she is, not what you want her to be. But accepting that essential truth is different from compelling a woman to give birth to a child whose intellectual capacity will be impaired, whose life choices will be limited, whose health may be compromised. Most children with Down syndrome have mild to moderate cognitive impairment, meaning an IQ between 55 and 70 (mild) or between 35 and 55 (moderate). This means limited capacity for independent living and financial security; Down syndrome is life-altering for the entire family.

Marcus, and her supporters in the article's comments, are quick to argue that individuals facing Down syndrome are at a cognitive "disadvantage" with their peers. Why burden a family, and by extension, the child by unnecessarily bringing them into the world?

On one level, Marcus' argument that most people abort children with Down syndrome is correct. Approximately 67% of all children with Down syndrome are aborted and 92% of those diagnosed with the condition lose their lives to abortion. There are many in this world willing to stop a child's beating heart simply because her or she was diagnosed with Down syndrome. However, what Marcus neglects to mention is that many of these decisions are based on limited information regarding Down syndrome's effects on children or their parents.

Advocates for those diagnosed with Down syndrome argue that many of these abortions stem from misconceptions about Down syndrome. A Down syndrome diagnosis is not a death sentence nor a guarantee that children will not live full and happy lives. Contrary to popular opinion, the research shows that children and adults with Down syndrome are extremely likely to be satisfied with their lives.

In a study published in the American Journal of Medical Genetics, researchers surveyed 284 people with Down syndrome ages 12 and older and asked them questions about their happiness and life-satisfaction. They found:

99 percent said they were happy with their lives

97 percent liked who they are

96 percent liked how they look

86 percent indicated they could make friends easily

Only 4 percent expressed sadness about their life

The same researchers published another study where they interviewed over 2,000 parents of Down syndrome children. They found:

99% reported that they loved their son or daughter

97% were proud of their child

79% felt their outlook on life was more positive because of their child with Down syndrome

4% regretted having them.

According to the American Psychological Association, 28% of women will regret their abortion within two years. This means that a woman is seven times more likely to regret her abortion decision than she is to regret giving birth to a child with Down syndrome.

Unfortunately, many pro-choice activists work to suppress these facts. Nowhere in Marcus' article does she mention these studies or link to them. Why not? If in fact this is a "painful" choice each woman should make on her own, shouldn't she make it with all the facts? Why are pro-choice writers like Marcus so determined to eliminate these children when we know they and their parents are very likely to live happy and productive lives?

I think it is because they are uncomfortable with how satisfied these "disabled" individuals and their parents are with their "constrained" lives. After all, individuals with Down syndrome have lower IQs, fewer job prospects, and require more supervision than their peers, yet they love life in a way that few of us ever experience. Every time I meet someone with Down syndrome, I leave the encounter marveling at their outlook on life. Every happy adult with Down syndrome is living proof that Marcus' hypothetical abortion is fundamentally selfish and shortsighted. That no matter how much she or anyone else tries to varnish their decision with appeals to "freedom of conscience," "bodily autonomy," or "choice," it is nothing more than eugenics by another name. It is saying that one individual has the right to stop the beating heart of another simply because their condition makes us uncomfortable.

I am reminded of reading Christ's words to the Pharisees and social elite of His day. These powerful men refused to assign much value to children. Even Christ's own disciples attempted to refuse them access to the Savior. Yet, Jesus ordered that children be allowed in His presence and told the shocked crowd that the Kingdom of Heaven was made up of those who had childlike faith. The elite scoffed at this. To become childlike in their perspective on life was a bridge too far.

Today, I fear many have the same reaction. Our society prides itself on its "progress," yet we act much like the Pharisees. We tell ourselves that more money, more possessions, and higher IQs will make us happy, yet anti-depressants fly off pharmacy shelves. Maybe it is we who have something wrong with our outlook on life and not the individuals with Down syndrome that our society works so hard to eradicate. Maybe instead of killing these children so they don't grow up happy in spite of their "disability," we should examine our own values and see why our satisfaction is so hard to attain.

If we don't, if we continue down the path of Ruth Marcus and those like her, then we may just succeed in eradicating all children with Down syndrome in the womb and deny ourselves lasting satisfaction in the process. True and lasting satisfaction is not found in eliminating someone who gets in the way of our goals, dreams, or desires, but in making those around us and their betterment our goal, dream, and desire. In short, lasting happiness is found in loving our neighbor as ourselves.

That is something aborting a child with Down syndrome will never provide.

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The Reason Why So Many People Want to Eradicate Unborn Children with Down syndrome

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Why do so many in our culture want to eliminate unborn children with disabilities such as Down syndrome? On March 9th, the deputy editorial page editor of the Washington Post, Ruth Marcus, wrote an article entitled, " I would've aborted a fetus with Down syndrome. Women need that right."

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99% reported that they loved their son or daughter

97% were proud of their child

79% felt their outlook on life was more positive because of their child with Down syndrome

4% regretted having them.

# data[].attributes.attachment_link.readable_text
Why do so many in our culture want to eliminate unborn children with disabilities such as Down syndrome? On March 9th, the deputy editorial page editor of the Washington Post, Ruth Marcus, wrote an article entitled, " I would've aborted a fetus with Down syndrome. Women need that right." When parents of children with Down syndrome strongly criticized her argument, she doubled down on her position by writing a subsequent article entitled, "The silenced majority of women who would abort a fetus with Down syndrome." Marcus insisted that she is part of the majority of women who believe that abortion is better than bringing a child with Down syndrome into the world. From her first article:

I respect - I admire - families that knowingly welcome a baby with Down syndrome into their lives. Certainly, to be a parent is to take the risks that accompany parenting; you love your child for who she is, not what you want her to be. But accepting that essential truth is different from compelling a woman to give birth to a child whose intellectual capacity will be impaired, whose life choices will be limited, whose health may be compromised. Most children with Down syndrome have mild to moderate cognitive impairment, meaning an IQ between 55 and 70 (mild) or between 35 and 55 (moderate). This means limited capacity for independent living and financial security; Down syndrome is life-altering for the entire family.

Marcus, and her supporters in the article's comments, are quick to argue that individuals facing Down syndrome are at a cognitive "disadvantage" with their peers. Why burden a family, and by extension, the child by unnecessarily bringing them into the world?

On one level, Marcus' argument that most people abort children with Down syndrome is correct. Approximately 67% of all children with Down syndrome are aborted and 92% of those diagnosed with the condition lose their lives to abortion. There are many in this world willing to stop a child's beating heart simply because her or she was diagnosed with Down syndrome. However, what Marcus neglects to mention is that many of these decisions are based on limited information regarding Down syndrome's effects on children or their parents.

Advocates for those diagnosed with Down syndrome argue that many of these abortions stem from misconceptions about Down syndrome. A Down syndrome diagnosis is not a death sentence nor a guarantee that children will not live full and happy lives. Contrary to popular opinion, the research shows that children and adults with Down syndrome are extremely likely to be satisfied with their lives.

In a study published in the American Journal of Medical Genetics, researchers surveyed 284 people with Down syndrome ages 12 and older and asked them questions about their happiness and life-satisfaction. They found:

99 percent said they were happy with their lives

97 percent liked who they are

96 percent liked how they look

86 percent indicated they could make friends easily

Only 4 percent expressed sadness about their life

The same researchers published another study where they interviewed over 2,000 parents of Down syndrome children. They found:

99% reported that they loved their son or daughter

97% were proud of their child

79% felt their outlook on life was more positive because of their child with Down syndrome

4% regretted having them.

According to the American Psychological Association, 28% of women will regret their abortion within two years. This means that a woman is seven times more likely to regret her abortion decision than she is to regret giving birth to a child with Down syndrome.

Unfortunately, many pro-choice activists work to suppress these facts. Nowhere in Marcus' article does she mention these studies or link to them. Why not? If in fact this is a "painful" choice each woman should make on her own, shouldn't she make it with all the facts? Why are pro-choice writers like Marcus so determined to eliminate these children when we know they and their parents are very likely to live happy and productive lives?

I think it is because they are uncomfortable with how satisfied these "disabled" individuals and their parents are with their "constrained" lives. After all, individuals with Down syndrome have lower IQs, fewer job prospects, and require more supervision than their peers, yet they love life in a way that few of us ever experience. Every time I meet someone with Down syndrome, I leave the encounter marveling at their outlook on life. Every happy adult with Down syndrome is living proof that Marcus' hypothetical abortion is fundamentally selfish and shortsighted. That no matter how much she or anyone else tries to varnish their decision with appeals to "freedom of conscience," "bodily autonomy," or "choice," it is nothing more than eugenics by another name. It is saying that one individual has the right to stop the beating heart of another simply because their condition makes us uncomfortable.

I am reminded of reading Christ's words to the Pharisees and social elite of His day. These powerful men refused to assign much value to children. Even Christ's own disciples attempted to refuse them access to the Savior. Yet, Jesus ordered that children be allowed in His presence and told the shocked crowd that the Kingdom of Heaven was made up of those who had childlike faith. The elite scoffed at this. To become childlike in their perspective on life was a bridge too far.

Today, I fear many have the same reaction. Our society prides itself on its "progress," yet we act much like the Pharisees. We tell ourselves that more money, more possessions, and higher IQs will make us happy, yet anti-depressants fly off pharmacy shelves. Maybe it is we who have something wrong with our outlook on life and not the individuals with Down syndrome that our society works so hard to eradicate. Maybe instead of killing these children so they don't grow up happy in spite of their "disability," we should examine our own values and see why our satisfaction is so hard to attain.

If we don't, if we continue down the path of Ruth Marcus and those like her, then we may just succeed in eradicating all children with Down syndrome in the womb and deny ourselves lasting satisfaction in the process. True and lasting satisfaction is not found in eliminating someone who gets in the way of our goals, dreams, or desires, but in making those around us and their betterment our goal, dream, and desire. In short, lasting happiness is found in loving our neighbor as ourselves.

That is something aborting a child with Down syndrome will never provide.

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The Reason Why So Many People Want to Eradicate Unborn Children with Down syndrome

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Why do so many in our culture want to eliminate unborn children with disabilities such as Down syndrome? On March 9th, the deputy editorial page editor of the Washington Post, Ruth Marcus, wrote an article entitled, " I would've aborted a fetus with Down syndrome. Women need that right."