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The Last Downer: China and the End of Down Syndrome

With screenings for Down syndrome becoming more advanced, there are less and less babies being born with Down in China every year. Unborn babies with Down syndrome are allowed to be aborted to up to nine months of pregnancy.

Manya Koetse

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New screenings that can predict if an unborn baby has Down syndrome have sparked wide debate across the world – mostly because their results often lead to parents choosing for abortion. The ethical debate that is so alive in many countries seems practically non-existent in China, where Down syndrome is slowly disappearing from society. Unborn babies with Down syndrome are allowed to be aborted to up to the ninth month of pregnancy; 21% of Down-related abortions in China occur during or after the seventh month.

Last month was World Down Dyndrome Day (世界唐氏综合征日, March 21) and next month marks China’s National Disability Day (全国助残日, May 15) – both are occasions when Chinese media pay extra attention to Down syndrome, a disorder that is slowly disappearing from Chinese society.

On World Down Syndrome Day, Chinese state media broadcaster CCTV wrote on its Weibo account: “Currently, medical science does not have effective prevention and treatment methods for Down syndrome, but it can be detected early through prenatal screening. You might have seen this kind of face: mouth slightly open, a blank expression, eyes somewhat wide apart,.. break your prejudices and understand them!” This text is accompanied by different facts about Down syndrome pictured with a cartoon baby on CCTV’s account page (pictured below).

angrbaby

“I’m still nervously awaiting the results of the amniotic fluid test,” one netizen responds to the post: “I hope my baby is healthy and normal.”

On Chinese social media, many expecting mothers express their worries about screening results and the health of their unborn child. But the ethical debate that is so alive in many other countries about Down syndrome screening and abortion seems practically non-existent in China. One Weibo user comments: “In foreign countries, there are many mothers raising kids with Down, because their religion does not allow them to abort the baby.”

 

THE LAST DOWNER

“New medical techniques and the ethical questions that come with it have caused ample discussion on Down syndrome in many nations across the world.”

 

Down syndrome (DS) is a congenital disorder caused by a chromosome defect, that exists in all regions worldwide. Children with DS often have an intellectual disability and are also affected physically in their appearance and general health. Down syndrome has an incidence of 1 in 600–1000 live births, differing per country (UN; Wang et al 2013, 273). The disorder was named after John Langdon Down, the British physician who first classified this genetic disorder in 1862. In Chinese, it is known as 唐氏综合征 (Tángshì zònghézhēng) or as 先天愚型 (Xiāntiān yúxíng), the latter literally meaning ‘naturally stupid-type’.

With new techniques, it has become easier for doctors to safely detect whether or not a fetus has Down syndrome. In many countries, women can now choose for first-trimester prenatal screenings that can indicate the likelihood they are carrying a baby with Down syndrome. These tests can be followed up with diagnostic tests, either through amniocentesis (amniotic fluid test) or a DNA blood test, that can give a conclusive answer. If the unborn baby turns out to have DS, parents often have the option to abort it.

These new medical techniques and the ethical questions that come with them have caused ample discussions on Down syndrome in many nations across the world. Denmark introduced national guidelines for prenatal screening and diagnosis as early as 2004, which has led to an all-time low of Danish infants with Down syndrome – 95%-98% of pregnant women choose to abort a fetus with DS (Vice 2015). This means that Down could become something of the past; not just in Denmark, but also in other countries that have followed its example after 2004.

According to anti-abortion media, what is happening in Denmark is a “targeted form of genocide.” In the United States, the test has also become a focus of controversy, as it is intertwined with America’s general debate over abortion.

NRC

The Dutch TV-series ‘The Last Downer’ explored the gradual disappearance of Down Syndrome. The show was co-hosted by two young adults who were born with DS themselves. Photo via NPO/NRC of TV Show “De Laatste Downer.”

 

In the Netherlands, a TV show revolving around ‘the end of Down syndrome’ was recently aired on national television. The series, that was titled ‘The Last Downer’, explored what society loses if Down syndrome disappears. It also talked about the ethical, social and psychological consequences of having a child with Down syndrome. ‘The Last Downer’ also triggered debate, as some critics deemed that it was too much in favor of the pro-life movement.

 

DOWN SYNDROME IN CHINA

“21% of abortions related to DS in China take place after the 28th week of pregnancy.”

 

In China, it is estimated that 1 out of 700 infants are affected with Down syndrome. Although this percentage is relatively low compared to other countries, it is an enormous figure nevertheless due to China’s huge population (Deng et al 2015, 311).

China’s Ministry of Health has promoted nationwide prenatal screenings for birth defects since 2003 (312). As pointed out in recent Chinese research, there has since been a sharp increase in the percentage of prenatal diagnosis and consequential birth termination (Deng et al 2015, 315).

The detection of Down syndrome through prenatal diagnosis in China went from nearly 13% in 2003 to over 69% in 2011 – with urban women having better access to early screenings and diagnosis than women living in the more rural areas of China. Around 95% of women terminate their pregnancy after learning the baby has DS, which is close to similarly high numbers in countries like Denmark or Hungary.

What is different in China, is that abortions can take place up to the ninth month of pregnancy.* In nearly 80% of the cases where the DS diagnosis led to abortion, this termination took place before 28 weeks. In the other cases, the pregnancy was terminated later than 28 weeks; meaning that 21% of abortions related to DS take place after the 28th week of pregnancy (ibid. 2015, 315).** In, for example, the Netherlands, abortion can take place up to 24 weeks of pregnancy, which is determined as the moment after which a fetus would be able to survive outside the uterus. Denmark allows for abortions to take place until the 12th week of pregnancy.

Chinese doctors encourage screening more strongly when pregnant women are older. According to current regulations in China, pregnant women aged 35 or above will be suggested to have an amniocentesis test directly, and, as research points out, “most Chinese women opt to abort fetuses with malformations” (Deng et al 2015, 316). Overall, the prevalence of prenatal diagnosis of DS and the number of related abortions is higher in urban areas than in China’s rural areas due to better medical facilities in cities. This also suggests that the majority of babies with DS are now born in the countryside, where parents do not always have access to the medical care they need.

 

ABORTION IS OKAY

“Bright-pink advertisements on ‘painless abortions’ depict smiling women, butterflies and flowers.”

 

On Weibo, many netizens share their experiences with prenatal screening. One pregnant woman says the test has cost her 191 RMB (±30 US$), another netizen responds: “In my hometown, these screenings are free of charge!” Another Weibo user shares her anxiousness: “I’ve been worrying about this Down screening all week,” she writes on April 21st. The following day, she replies to the comments with crying emoticons.

Although the screenings are a big issue on Chinese social media, the ethical question of the abortions is seemingly not. This might relate to the fact that abortion is not as contentious in China as it is in many other countries.

Pregnancy termination became quite common in China during the 20th century in relation to the one-child policy. By now, China has the highest abortion rate in the world. According to the National Health and Family Planning Commission, 13 million abortions are carried out in China every year. The actual number is probably much higher, as the official number does not include the abortion numbers from private clinics, nor the estimated 10 million induced abortions per year through medicine (Xinhua 2014), nor the numbers of sex-selective abortions– a practice that has officially been illegal since 2004.

The prevalence of abortions in China has led to a booming industry focused on abortion procedures. Bright-pink advertisements on ‘painless abortions’ depict smiling women, butterflies and flowers.

beaqueen

Some even promise that the abortion will be over within ‘a dreamlike three minutes’ (for more on this read: Glamorous & Painless – China’s Booming Abortion Industry). Although China has a painful past when it comes to forced abortions, the personal choice for abortion is not as controversial as it is in many countries where the Down syndrome detection debate is more alive.

abortion

“I’m drinking fresh rosedew after my abortion,” one netizen writes: “It’s good for my cold womb.”

 

THE HARDSHIPS OF DOWN CHILDREN IN CHINA

“Giving a child with Down syndrome up for adoption is very difficult, as China’s DS children are generally deemed ‘unadoptable’.”

 

Besides the fact that abortion is considered relatively uncontroversial in China, the high rate of abortions for DS-diagnosed babies might also relate to the fact that disabled children face many difficulties in China due to stigmatization and practical hurdles.

Raising a handicapped child is a heavy burden for many parents in China, who receive little government support and often do not have the means to make sure their child gets the medical care and education they need. This means that abandoning the child sometimes is the only solution for parents to make sure their child is taken into an institution (Yoxall 2008, 25).

downer

Giving a child with Down syndrome up for adoption is very difficult, as China’s DS children are generally deemed ‘unadoptable‘. Until recently, it was legally not possible to adopt a child with Down within China. Since this has now changed, international organizations like the Bamboo Project help parents who want to adopt a child with Down syndrome from China.

 

SCREENINGS FOR DOWN: ANXIETY & CONFUSION

“If your baby has Down syndrome, you can’t keep it – you do understand this, don’t you?”

 

In China’s urban areas, first-trimester screenings for DS (唐氏筛查) through a blood test have become practically mandatory. Some clinics have 100% screening guidelines for all of their patients, but do ask parents to sign for consent first; other hospitals simply proceed to include the test with general pregnancy check-ups without any permission.

Screening procedures differ per hospital and can be confusing for expecting mothers: “Today my doctor told me that because I am already 35, I should do an amniocentesis test,” one netizen writes on Weibo: “but the blood test in my first trimester indicated I had low risk of having a baby with Down. I’m very confused if I should do it or not.”

China’s screening procedures and prevalent attitudes on how to deal with a baby that possibly has DS can be shocking to some. A 31-year-old Dutch mum named Anna (alias), who lives in Shanghai, recently shared her experiences on Facebook. Anna, pregnant with her second baby, writes:

I was unable to come on Facebook for some time due to problems with my VPN. During this period, I’ve come across something that I loathe even more than China’s internet censorship. “They’ve tried calling you but you didn’t pick up,” the Chinese nurse tells me while looking up from a form, as she points me to an examination room. I walk in, and ask the doctor what’s going on – I vaguely remember a ‘standard’ blood test (..) – “‘You have an increased risk for a child with a mental disability,’ the doctor straightforwardly tells me. ‘Excuse me?’ – I ask her to repeat her sentence. ‘The child might be retarded,’ she tells me.

Anna writes: “In the Netherlands, the availability of prenatal tests for Down syndrome has caused quite some controversy earlier this year. It is not allowed for doctors to proactively encourage women to do this test unless there’s an increased risk for them to have a child with an intellectual disability – because they are above the age of 40, for example. But this is not the case in China, where every pregnant woman, no matter her age, is tested for heightened risk through blood screening. I ask the doctor what the test results are, since I’m only 31. ‘Well, that’s not like being 21 anymore, now it is?’ she snarls at me.”

Anna explains that the results of her blood test showed there was a 1-in-200 chance her baby had Down syndrome. After informing Anna about this, the doctor says: “You can choose if you now want an amniocentesis or a DNA test. The first is more expensive and needs to be done in a private clinic, here’s an information leaflet, just think about it.”

She chooses to do the DNA test, which is safer for mothers and their unborn babies than the amniocentesis. She says: “I was initially just shocked to hear there was an increased risk for me to have a child with a disorder, but it also bothered me that the initial screening was done without my consent. I ask the doctor what happens if my baby turns out to have Down syndrome. ‘Then you can’t keep it,’ she gives me a piercing look: ‘You do understand this, don’t you?’

Anna writes: “She advised me to timely book a possible abortion, but that the procedure would be possible until 32 (!) weeks.” Anna receives the DNA test results a week later through text message, and her baby shows no signs of abnormalities. Despite her relief, she feels uncomfortable about the intrusive way in which her prenatal screening and its possible outcome was handled.

Another foreigner living in Beijing told What’s on Weibo they also were tested for Down syndrome risks in the first trimester of pregnancy at Beijing United hospital without being asked for permission first. Although they were surprised to get the results, they did not react strongly to it as the test turned out to be very low risk.

Although the ethical debate on this issue is generally lacking from mainstream media, one story did make headlines last year when a woman from Hubei was determined to end her pregnancy at 16 weeks because of the Down syndrome screening. The initial blood screenings showed an increased risk of DS, and the woman arranged an abortion – in spite of the doctors convincing her that she should wait for the actual diagnoses screening first. This story also shows how intertwined prenatal screenings and abortion have become.

 

DS IN CHINA: TABOOS AND SOCIAL STIGMA

“I think my sister’s baby has Down syndrome, but I am too afraid to ask her.”

 

Chinese netizens share their experience with Down syndrome on various online message boards. One netizen tells how it is growing up with a brother with Down syndrome. “My brother was born prematurely and was in weak health. The doctor told my parents to just give up on him. But my father refused to give up, because it was a boy, and he thinks boys are worth more than girls. So my brother lived.” The netizen tells how his parents were told by doctors that their child was simply “hopeless”, and that his brother was always teased in school.

On message board Douban, multiple netizens share how doctors encourage couples to have an abortion if their unborn baby is diagnosed with DS.  The discussion of Down on Chinese social media shows that DS is heavily stigmatized and that it is sometimes also considered a taboo.  Some netizens tell about former classmates with Down who were constantly bullied, and one netizen writes: “I think my sister’s baby has Down syndrome, but I am too afraid to ask her.”

Now that rapidly advancing medical techniques have decreased the prevalence of DS in China, chances are that the less common the disorder is, the more stigmatized it will become. It is also probable that over the next one or two decades, if rural areas get better access to medical care, Down syndrome will altogether disappear from China.
downsscreening

For China’s upcoming ‘day for the handicapped’, multiple organizations try to raise more public awareness for Down syndrome. This year, the day will specifically focus on handicapped orphans. For this occasion Chinese media recently wrote about an orphanage in Tianjin, where one-third of all children are Down syndrome babies who were left behind by their parents.

Although the article describes children with DS as little “happy angels”, one Chinese birth clinic seems to think otherwise. In their ad (see image), their message is loud and clear: “Reject children with Down syndrome! Give birth to a healthy baby!” Angels or not, modern-day China seems to have no place for Down syndrome children.

– By Manya Koetse

[rp4wp]

References

Wang, S.-S., Wang, C., Qiao, F.-Y., Lv, J.-J. & Feng, L. 2013. “Polymorphisms in genes RFC-1/CBS as maternal risk factors for Down syndrome in China.” Arch Gyneocol Obstet 288: 273-277.

Deng, C., Yi, L., Mu, Y., Zhu, J., Qin, Y., Fan, X., Li, Q. & Dai, L. 2015. “Recent trends in the birth prevalence of Down syndrome in China: impact of prenatal diagnosis and subsequent terminations.” Prenatal Diagnosis, 35(4), 311–318.

Yoxal, James W. 2008. China’s Social Policy: Meeting the Needs of Orphaned and Disabled Children. Master Thesis, Union Institute & University.

NB: other references are linked to in-text.

* As written by Deng et al (2015): “Following a systemic and standardized diagnostic process, pregnancy affected by severe anomalies such as DS is allowed to be terminated at any gestational age following informed consent” (312).

** According to 2003-2011 surveillance data, study by Deng et al uses data from the Chinese Birth Defects Monitoring Network.

©2016 Whatsonweibo. All rights reserved. Do not reproduce our content without permission – you can contact us at info@whatsonweibo.com.

Manya Koetse is the editor-in-chief of www.whatsonweibo.com. She is a writer and consultant (Sinologist, MPhil) on social trends in China, with a focus on social media and digital developments, popular culture, and gender issues. Contact at manya@whatsonweibo.com, or follow on Twitter.

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3 Comments

3 Comments

  1. Avatar

    Colette

    July 18, 2016 at 1:02 am

    In the UK termination for DS is also permitted until 9 months………Lord Shinkwin is trying to change this.

  2. Avatar

    jack

    October 27, 2016 at 3:40 am

    The truth is the chinese and the Japanese are a mongoloid race they were created from the daughters of a man called Lot the nephew of abraham in the bible read the story of Sodom and gomorrah this will tell of Lots two daughters and there plan…the modern day chinese are the moabites and the Japanese are the modern day ammonites,incest causes down syndrome or retardation these two nations are the product of incest…BASTARD babies…truth is hard to accept

    • Avatar

      Anonymous

      December 27, 2016 at 6:11 am

      Please go back to /pol/.

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China Health & Science

40-Year-Old Woman Completes Shanghai Marathon While 8 Months Pregnant

Pregnant marathon runner Lili clashes with Chinese traditional attitudes towards women who are expecting a baby.

Jessica Colwell

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A 40-year-old woman named Li Lili (黎莉莉) became news in China after she ran the Shanghai Marathon last Sunday while 32 weeks pregnant, completing the race in five hours and 17 minutes.

This was the third marathon Li has run during her pregnancy. She ran the first two during week eight (with a time of 3:54:43) and week 22 (with a time of 4:47:58) of her pregnancy.

Lily is an avid runner, having completed 62 marathons during her lifetime. Her story went viral on Weibo under the hashtag “8 Months Pregnant 40-Year-Old Woman Runs Marathon” (#40岁孕妇怀胎8月跑完全马#), which has received over 200 million reads at time of writing.

[Li has run three marathons during her pregnancy, one in each trimester.]

Her story has ignited debate across Weibo this week regarding the merits and dangers of vigorous exercise during pregnancy. In interviews with the press, however, Li remained defiant in the face of her critics.

“For many people, they are worried about this because they don’t understand it,” she told video news site Pear Video in an interview.

“Many people have told me it is dangerous. They criticize me, just like they criticized Chen Yihan,” she says, referring to Taiwanese actress Ivy Chen (陈意涵) who faced fierce online criticism after posting pictures of herself running while five months pregnant in 2018.

Actress Ivy Chen’s controversial Weibo post from 2018, showing her running 5 kilometers while five months pregnant.

“But most of these critics have never even been pregnant,” Li continued: “The fact is, I did this because I have a very deep understanding of my own body. I’ve run over 60 marathons, I am an extremely good runner. I’ve run a marathon in 3:28, which is considered an excellent time even for talented athletes, even for men. I have my own training methods, I’ve been training for a very long time, and have carefully prepared for these marathons.”

The reactions to Li’s story online have ranged from enthusiastic praise to outright condemnation.

“Wow! I admire how strong she is! It is said that each person knows what is right for them in their own heart. It’s none of your business what she does with this unborn hero!” gushes the most popular comment on Pear Video’s Weibo post about the story.

But another popular comment argues that marathon running is actually inappropriate for Chinese women in general: “Foreigners running marathons is fine, but this is not for Chinese women. Pregnant Chinese women running marathons is equivalent to them not caring for their children.”

The results from a poll put out by Chengdu Economic Daily so far show the majority of readers do not oppose Li’s decision to run a marathon, with 54,000 choosing the option “One case cannot represent the whole, it will vary from individual to individual” and 38,000 choosing “Support, if the mother’s body is strong enough.” Only 17,000 chose the option “Oppose, pregnant women should not engage in vigorous exercise.”

“What do you think of a 40-year-old woman running a marathon while 8 months pregnant?” asks a Weibo poll by Chengdu Economic Daily.

Some comments on the poll argued that Li was irresponsible to take part in a marathon, in case something did go wrong: “Problems come up when you least expect them. If it’s just you running on your own, that’s one thing. But this is a group race. I can’t say if it’s right or wrong, but it could bring a lot of trouble to other people.”

But the majority of popular comments expressed outright support and admiration, or at the very least opposition to Li’s critics, telling them to mind their own business.

The support for Li’s decision appears to fly in the face of Chinese traditional attitudes towards pregnant women. The list of dos and don’ts for Chinese mothers-to-be is long and complex, ranging from the bizarre (no eating/drinking dark foods so as not to affect the baby’s skin color) to the more common (avoiding shellfish).

The belief that pregnant mothers should avoid exertion is high on the list, extending even to the month after birth.

But despite these strong traditions, Li’s strength and determination have clearly inspired new support for expectant mothers who wish to continue an active lifestyle while pregnant.

Also read: ‘Sitting the Month’ – a Gift or Torture?

Also read: Bad Mom To Be? Pregnant Woman Intentionally Trips 4-Year-Old Boy in Baoji

By Jessica Colwell
Follow @whatsonweibo

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China Health & Science

No Need for Plague Panic? China’s Trending Plague Outbreak

After the Year of the Pig brought swine flue, some fear the Year of the Rat will bring the ‘rat plague.’

Manya Koetse

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For the past nine days, during which three cases of the plague have been reported in China, the deadly bubonic plague has become a hot topic on Chinese social media.

The topic first made headlines on November 12, when Chinese state media announced that two people, a husband and wife from Inner Mongolia, were transported to Beijing’s Chaoyang Hospital for treatment after being diagnosed with the pneumonic plague.

The couple reportedly got sick after eating raw marmot kidney.

A 55-year old hunter from the same region, the Inner Mongolian Xilingol League, was later also diagnosed with bubonic plague after eating wild rabbit meat.

The bubonic plague, also called the ‘Black Death,’ is an infectious disease that is known to have caused one of the most devastating pandemics in human history, killing millions of people in 14th century Europe.

News of the three cases of bubonic plague reminded many of the 2003 SARS panic; an outbreak of SARS in southern China caused over 8000 cases that year.

The World Health Organisation criticized China at the time for covering up the scale of the problem, with officials conceding in the Spring of 2003 that China’s SARs problem was “nearly 10 times worse than had been admitted.”

Current online reports on the bubonic plague in China stress that there is no reason for panic, with a hospital spokesperson confirming that the situation is “under control.”

42 people who are known to have come into contact with the Chinese patients have all been quarantined and were not found to have any symptoms of catching the disease.

Chinese (state) media channels are spreading social media posts this week that mainly emphasize that the plague “can be prevented, controlled, and managed,” and that it can be effectively treated.

“Don’t panic over plague outbreak,” Sina News headlines, with People’s Daily posting on Weibo that, according to the China Center for Disease Control and Prevention, “there is no need to worry.”

The bubonic plague primarily affects rodents and other animals, with animals – and incidentally humans – usually contracting the infection through insects such as (rat) fleas. This form of plague is highly contagious – can spread through coughing – and could be fatal within days if left untreated (Benedict 1996, 4).

Mammals such as rabbits or marmots, as eaten by the recent Chinese patients, but also rats, squirrels, gerbils, mice, etc., can all harbor the disease.

Although the disease is increasingly rare, and for many is something from the history books, there were still 3248 cases worldwide between 2010 and 2015, leading to 584 deaths, according to the World Health Organization.

Although Chinese media stress that there is no need to panic over the recent outbreak of the bubonic plague, many netizens still fear an epidemic, making comments such as: “The Year of the Pig brought the [African] swine fever, now the plague is starting just before the Year of the Rat!” (The word for ‘plague’ in Chinese is 鼠疫 shǔyì, literally meaning ‘rat plague’ or ‘mouse plague’).

Others are asking questions such as: “Do we risk the plague more if we have mice in the house?” and “How can we prevent getting it?”

Meanwhile, according to Jiemian News reports, the area in Inner Mongolia where the patients originally contracted the illness is currently under strict control by the Ministries of Health and Agriculture; some roads are closed off, and there’s temperature screening for those taking public transport.

The area has seen four cases of plague over the past decades, the most recent one before this month being in 2004.

Last news on the current three patients was from last Saturday, when it was reported that at least one of the patients is now in stable condition.

By Manya Koetse
Follow @whatsonweibo

References

Benedict, Carol Ann. 1996. Bubonic Plague in Nineteenth Plague in Nineteenth Century China. Stanford University Press.

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