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).
“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.
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.
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.
“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).
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.
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.
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.
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Online Doctors and Counting Steps: Top 5 Chinese Health & Fitness Apps
These are the popular health & fitness apps used by Chinese netizens.
Ttracking psychical activities and sharing them with friends on social media is something that has become more popular in China, with other types of apps in the health and fitness categories also gaining in popularity.
In a series of five articles, What’s on Weibo is providing some insights into what apps are currently popular in mainland China. After the categories news apps, mobile gaming, and short video & livestreaming, we will now highlight some of the more popular apps in the category of health and fitness.
We made our selection based on the data from the Android app stores Tencent, Baidu, Huawei, and Zhushou360. We tried our best to give you a representative overview of a variety of apps that are currently most used in China, but want to remind you that these lists are by no official “top 5” charts.
Here we go!
#1 Keep 自由运动场
Keep (literally: Free Sportsground 自由运动场) is currently the most popular health and fitness app in the Chinese Apple store. Keep first appeared in 2015, and has since grown to become the country’s biggest online sports community. Following their success, Keep has also expanded its businesses outside of the online world and now have their own KeepLand Gyms.
Keep is a very all-round app. When first using the app, users have to answer a number of questions concerning their health, age, motivation to exercise, level of experience, and preferred sports. Once the user has answered all the required questions, the app is ready for use.
The app’s main page is called ‘workout’ and is divided into different workout categories. Per category, the user can find many different exercises, including (video) explanations and duration of the workout sessions. For certain endurance sports such as running and cycling, the app will also track the user’s route and speed.
Based on the measured activity, the app will recommend new exercises. Besides workouts, there are also classes you can follow and challenges to take on.
But becoming healthier takes more than exercising alone. Therefore, the app also incorporated a food page, providing its users with diet advice, recipes, and calorie info.
The app also has its own shop selling sports clothes and attributes, food supplements, and other trendy merchandise. For those who share their personal results on social media platforms, such as WeChat, get discounts in the app’s webshop.
Last but not least, the app also has a ‘community space’ where users can share their experiences and find support.
#2 Meet You 美柚月经期助手
Meet You is the English name of this app, that is literally called ‘Beautiful Pomelo Menstruation Tracker’ (美柚月经期助手), with the pomelo being a fruit that symbolizes prosperity, good luck, and positivity. The app is a multifunctional period tracker for all women but is mainly focused on women who are trying to get pregnant, who are pregnant, or who already have children. Meet You promotes its app as a way to “make Chinese women even more beautiful and healthier.”
The most important page of Meet You is the personal main page. On this page, users can keep a record of their menstruation cycle, their day-to-day mood, weight, possible illnesses, bowel movements, use of anticonception, eating habits, etc.
Based on all this data, the app will analyze their current state of health, and recommend certain news articles and other reads that match the user’s preferences.
Additionally, users can also share their experiences and knowledge through the in-app ‘communities.’ The app has a number of communities focused on specific topics, such as Make-up Time, Love To Travel and Skin Care Beauty Salon.
Of course, there is also a shopping page, which, without doubt, is an important part of the app’s revenue model.
Meet You was first launched in 2013 by the Meiyou Information Technology Company, based in Xiamen. Throughout the years, the company launched several other apps all focused on women. Currently, Meet You has over 200 million users, of which 7 million were daily active users according to their own website. And according to a report by Jiguang, Meet You was the second most favored app among female mobile users in 2018.
#3 Qin Baobao 亲宝宝
Qin Baobao is an app to provide childcare information for pregnant woman and families with children up to the age of six. The app was first launched in 2013 by Hangzhou Xingwang Technology. Five years later, in 2018, the app had succeeded in reaching more than 100 million registered users, according to the company’s website.
In March 2019, the app was the third most popular app in the category Health and Fitness in the Chinese Apple Stores.
Qin Baobao is mainly focused on using technology to help families to better care for their young children. The app’s functions can be divided roughly into two parts. One part is focused on the improvement of children’s health and general well-being, and the other part is about recording the child’s development and sharing joyful moments with friends and family.
To help parents in taking care of their young children, the app provides functions such as soothing music and a knowledge database of age-appropriate foods.
There are also recipes for baby food, tips on how to make your child eat well, advice on what to do when your child is sick, and a Q&A forum.
The other part is all about documenting the growth of the child. Through texts, pictures, and videos, the precious first years of a child’s life can be safely stored and shared with friends and family.
What makes the app more attractive than other social media, according to the company’s statement, is that the app respects its users’ privacy and allegedly won’t be using the uploaded data for other purposes.
#4 Ping An Good Doctor 平安好医生
Ping An Good Doctor is a health care and medical consultation platform and part of the Ping An Healthcare and Technology Company.
Ping An Good Doctor was launched in 2015 and has become more popular since. In 2018, the number of registered users reached 265 million, of which nearly 54.7 million were monthly active users, according to their own website.
The app is a portal for medical consultation, something which is not easily available to everyone in China. The app provides four types of services: the family doctor, the consultation hall, medical bibliography of the doctors, and a ‘health community.’
The so-called family doctor service provides a one-on-one, private, real-time (paid) consultation between a user and a doctor. Online ‘patients’ can also talk to doctors in the ‘consultation hall,’ but this service is not private nor one-on-one.
The app certainly cannot replace an actual doctor’s appointment; not only does the virtual environment make it impossible to do a physical checkup, but the doctors also can not give any prescriptions to their ‘patients.’ The app does allow users to make an appointment with a doctor at an actual hospital through its appointment booking service.
Besides the medical consultation functions, the app also includes a catalog of China’s top-notch doctors. Through the app, users can request (offline) consultation or other services from these doctors. The compiled list of doctors is also a way to get insight into the different specialisms of different hospitals and doctors throughout the country.
The last feature of the app is the health community. In this area, all users can read articles about how to keep healthy, how to treat diseases, etc.
To provide all of these services, Ping An Good Doctor allegedly employed 1196 medical personnel in its in-house medical team, signed contracts with an additional 5,203 renowned external doctors, and partnered with over 3000 hospitals and over 15.000 pharmacies by the end of 2018.
#5 Yodo Run 悦动圈
The final app in this list is Yodo Run by the Shenzhen-based Rejoice Sports Tech Company. Yodo Run is one of China’s leading social health and fitness recording apps that strives to stimulate users to adopt a healthy lifestyle.
Through Yodo Run‘s advanced automatic step counting and GPS algorithm, the app can record various exercise patterns such as walking, running, fitness, and cycling. This way, users can keep track of their day-to-day movements. But that is not all that the app provides. The app also includes exercise schedules, video tutorials and a list of music.
To make sure people keep using the app, Yodo Run gives away tens of thousands of money packages every day. There are awards for reaching small goals, such as making 500 steps on your first day as an app user. But there are also awards that are more difficult to earn, such as long-term goals or when you partake in competitions or challenges.
But for those who are not using the app as a way to earn something extra, the app found another way to stimulates its users to exercise. And this is where Yodo Run differentiates itself with many other sports apps.
Yodo Run has a strong focus on bringing people together to exercise. To enable this, Yodo Run has the right tools to actively stimulate people to go out and meet others with a shared passion for exercising. According to their own website, the app has enabled people to unite in more than 500,000 “sports groups”, of which 10,000 are actual real-time running groups, spread over more than 300 cities worldwide.
The app is available in both Chinese and English.
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Let’s Talk about Sex, Grandpa: HIV on the Rise among China’s Elderly Men
There’s a sharp rise in HIV among Chinese elderly men, partly caused by a general lack of HIV & safe sex awareness.
As it is World AIDS Day on December 1st, and while major discussions on the alleged first gene-edited babies immune to HIV are still top trending, other noteworthy HIV-related news is also gaining a lot of attention on Chinese social media these days.
At time of writing, more than 220 million people have viewed the Weibo hashtag “Number of Elderly AIDS Cases on the Rise” (#老年艾滋病病例上升#). The hashtag has emerged amidst news reports that there is a significant rise in the number of HIV cases among the elderly in China, particularly among men.
According to an article published on Weibo by Chinese news outlet The Paper, the number of known cases of HIV among Chinese men above the age of 60 has risen from 8391 cases in 2012 to 19815 cases in 2017.
On November 27, the Hangzhou Center for Disease Control and Prevention (杭州市疾控中心) released news information relating to the problems of the rising cases of HIV and AIDS among the elderly.
In the city of Hangzhou, the detection of HIV among patients who are over 50 years old has doubled over the past three years.
According to a specialist from the Hangzhou center, this rise of HIV has to do with the limited HIV awareness among elderly communities, and with the fact that they are often not accustomed to using condoms.
Extramarital heterosexual sex is the main way of transmission for elderly men, with some also getting HIV because of homosexual sex. For elderly women, marital sex is the main way of transmission.
Because they are often late in seeking medical treatment when they feel unwell, the detection of HIV is often late, which makes that there is a relatively high number of AIDS-related deaths among elderly patients.
The problem of the rising number of HIV patients among China’s elderly population has received more scholarly attention of the past few years. According to a 2014 study by Tang et al, the sharp rise of HIV among elderly became more visible after 2010. In 2011, people over the age of 60 accounted for 28.4% of the total HIV cases Guangxi province (this was 18.7% in 2009).
A study in Nanning, capital of Guangxi, found that heterosexual transmission accounted for 90% of HIV cases among those over 50 years old, and that low-cost commercial sex venues were a primary site of infection (Tang et al 2014, 2).
The research by Tang et al shows that the use of aphrodisiacs (cheaper alternatives to Viagra, often illegally produced in local workshops) is significantly associated with an increased HIV risk for men over 50 who purchase commercial sex with female prostitutes (3).
One popular WeChat blog explained the reasons behind the problem of HIV among China’s elderly as follows:
1. They see prostitutes because they are seeking ways to fulfill their sexual needs.
2. There is little awareness on HIV or AIDS. (According to one story quoted in the blog, an elderly man who was diagnosed with HIV even told the doctor he had washed himself with detergent every time after he had sex with a prostitute – he “did not understand” how he got infected.)
3. They do not know how to use condoms / they are not accustomed to using condoms.
On Weibo, there are many commenters who show their sympathy for the elderly women who get infected with HIV within their marriage because of their husband’s extramarital sexual behaviors. “How tragic for them,” a popular comment said, while others wonder: “What’s the purpose of marriage then?”
The Center for Disease Control and Prevention advises people who have had extramarital sex, homosexual or heterosexual, to get themselves checked on HIV – also if there are people who suspect that their partner might have had sexual encounters outside of the marriage.
“The sex life of the elderly is a sensitive topic, but it needs to be talked about,” well-known lawyer Yi Shenghua (易胜华) writes on Weibo: “If we do not attach importance to the [open] discussion of this topic, the problem of AIDS among China’s eldery will only grow bigger.”
Tang Z, Wu X, Li G, Shen Z, Zhang H, et al. 2014. “Aphrodisiac Use Associated with HIV Infection in Elderly Male Clients of Low-Cost Commercial Sex Venues in Guangxi, China: A Matched Case-Control Study.” PLOS ONE 9(10): e109452. https://doi.org/10.1371/journal.pone.0109452.
Photo used in featured image by David Sinclair.
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