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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

Chinese Doctor Knocks Herself Out in Controversial Self-Experiment

Dr. Chen wanted to warn about the dangers of sevoflurane and other drugs.

Manya Koetse

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A female doctor has become a topic of discussion on Chinese social media for her self-experimentation with anesthesia.

Dr. Chen (陈大夫), a Nanjing doctor who works in the Obstetrics and Gynecology department, conducted the experiment in response to an ongoing discussion on whether or not a handkerchief dipped in inhalation anesthetics could cause immediate unconsciousness (“一捂就晕”).

The discussion was triggered by news of the death of a 23-year-old woman from Foshan, Guangdong Province, on February 8. The recent college graduate was found in a hotel room and it was later ruled that the cause of death was acute respiratory failure due to sevoflurane toxicity. The victim’s company supervisor, a 39-year-old man named Peng, is now suspected of fatally sedating and raping the young woman.

The case led to speculation among netizens whether or not sevoflurane could have knocked out the woman in seconds. There have been ongoing debates on the effects of general anesthetics used to sedate unsuspected victims, with some specialists arguing that it is not so easy to make someone slip into unconsciousness within a matter of seconds – saying it would take much longer than and only if an unusually high dosage is used.

Dr. Chen posted on February 10 that she was certain that it is possible for certain inhalation anesthetics to immediately make someone pass out, but her claim was refuted by others. The popular Weibo blogger Jiangning Popo (@江宁婆婆), a police officer, was one of the persons involved in the discussion claiming Chen was wrong.

Dr. Chen is active on Weibo under the handle @妇产科的陈大夫, and with over two million followers on her account, she is somewhat of a ‘celebrity’ doctor.

Instead of spending time arguing back and forth on the internet, Dr. Chen decided to put the issue to the test herself with an unopened bottle of sevoflurane that she had previously purchased for the planned sterilization of her dog. The sevoflurane had already passed its expiry date.

On February 16, Dr. Chen then asked someone else to film her doing the self-experiment and she posted the video on Weibo, in which she inhaled sevoflurane on a cloth. The doctor soon passed out in the video, which has since been deleted.

The experiment in the video lasts 64 seconds, and shows Chen:

– 00:01-00:06 Opening the bottle of sevoflurane
– 00:07-00:12 Preparing a cloth
– 00:13-00:23 Putting the sevoflurane on the cloth
– 00:23-00:26 Closing the cap of the bottle
– 00:27-00:28 Putting the cloth on her mouth and nose
– 00:29-01:33 = the time frame of losing consciousness (with first symptoms starting at 0:44) to going limp and falling on the floor (1:20) and being completely unconscious (1:21-1:33).

Dr. Chen’s experiment immediately sparked controversy after she posted the video on social media.

Although sevoflurane is a prescription drug and a controlled substance, it is also sold online as a type of drug. According to The Paper, the number of rape cases in China facilitated by drugs have risen over the past three years, with many ‘date rape drugs’ being sold and bought over the internet.

With sevoflurane being a controlled substance, Dr. Chen’s video triggered discussions on whether or not she was actually involving in a criminal act by doing the self-experiment. She also received criticism from within the medical community that she used this medication outside of the hospital environment.

Dr. Chen soon deleted the video herself and then called the police to personally explain and apologize for the incident, with the news soon going viral (#女医生拿自己做实验后报警并致歉#, 270 million views).

But despite the controversy, the doctor still defends her actions to some extend. Although Chen stated on February 17 that her self-experiment was “not right,” dangerous, and should never be imitated by anyone, she later also explained on her Weibo page that she thinks sevoflurane as a prescription drug is too easy to get your hands on and that the existing laws to prevent people from buying it are too weak.

The doctor has succeeded in raising public awareness on the dangers of these kinds of drugs. She also reminds both women and men never to leave their drink unattended, as the dangers of someone slipping something in your drink are real and the consequences can be grave.

As the incident has gone trending on Chinese social media, many commenters praise Dr. Chen for her experiment, while others also praise her for being transparent and admitting her mistakes.

 
By Manya Koetse
with contributions by Miranda Barnes

Spotted a mistake or want to add something? Please let us know in comments below or email us. First-time commenters, please be patient – we will have to manually approve your comment before it appears.

©2021 Whatsonweibo. All rights reserved. Do not reproduce our content without permission – you can contact us at info@whatsonweibo.com.

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China Health & Science

Applying China’s New Civil Code, Shanghai Court Annuls Marriage after Husband Hides HIV-positive Status from Wife

The court case triggered discussions on the need for premarital health checks.

Manya Koetse

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Jiang is HIV-positive but did not mention his status to his partner before getting married. Under China’s new civil code, the marriage is now annulled.

On January 4, a Shanghai court applied the new rules of China’s Civil Code for the first time to annul a marriage.

The Civil Code of the People’s Republic of China was adopted by the third session of the 13th National People’s Congress in May of last year and is effective since January 1st 2021. Some experts within China call the law a “milestone legislation” that will better protect people’s civil rights.

On Monday, January 4, a landmark court case in which the new civil code was applied for the first time in Shanghai went trending on Chinese social media.

The case involves a married couple of which the husband had failed to inform his wife that he was HIV positive before getting married.

In June of 2020, Mr. Jiang and Ms. Li got married after Li became pregnant. Afterward, Jiang confessed that he had been HIV-positive for multiple years, and was taking medication to control his disease.

Jiang alleged that, due to his medication, there was effectively no risk of transmitting HIV to his partner. But Li, who did not contract HIV, could not accept the situation and decided to terminate her pregnancy and applied for a marriage annulment.

Under the new civil code, annulment of marriage is possible when a partner who is “seriously ill” – which now includes HIV/AIDS – fails to inform their fiance of their condition before getting married.

Since Jiang had not informed his wife of his condition before tying the knot, the Shanghai Minhang Court ruled in Li’s favor and annulled the marriage.

On Weibo, the case has attracted a lot of attention, with one hashtag about the case (#男方婚前患艾滋未告知婚姻关系被撤销#) attracting 690 million views on Monday.

The news item also led to another hashtag gaining many views: “The Need for Premarital Medical Examination” (#婚前体检的必要性#) had 200 million views on its hashtag page on Monday.

One popular relationship blogger (@感情感分析异地恋) argues that the Shanghai court case shows the importance of couples getting a medical examination before getting married: “It’s not to discriminate against those who are HIV positive or who are suffering from other illnesses, but it’s about informing your partner about these things before getting married.”

Premarital health checks were previously compulsory in China, but these examinations are no longer required since 2003. Many couples do still go for premarital health checkups. According to Xinhua, over 61% of Chinese couples had a medical examination before getting married in 2018.

Although the application of China’s new civil code is generally praised by Weibo users in this case, it has previously also received a lot of negative attention. The new law also introduced a mandatory 30-day “cooling off” period for couples seeking divorce.

This “cooling off” period is seen as harmful to those who are suffering abuse within marriage and already have difficulties in leaving their abusive partner. The case of Lamu, a Tibetan vlogger who died after her husband set her on fire, also led to more online discussions of the “cooling off” period and how it makes women more vulnerable within their marriage.

By Manya Koetse

Spotted a mistake or want to add something? Please let us know in comments below or email us. First-time commenters, please be patient – we will have to manually approve your comment before it appears.

©2021 Whatsonweibo. All rights reserved. Do not reproduce our content without permission – you can contact us at info@whatsonweibo.com.

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