Today is World Down Syndrome Day 2019.
It was declared in a 2011 United Nations General Assembly resolution (A/RES/66/149), being aware that Down Syndrome “is a naturally occurring chromosomal arrangement that has always been a part of the human condition, exists in all regions across the globe and commonly results in variable effects on learning styles, physical characteristics or health”. It recognised “the inherent dignity, worth and valuable contributions of persons with intellectual disabilities as promoters of the well-being and diversity of their communities, and the importance of their individual autonomy and independence, including the freedom to make their own choices”.
Accordingly, it designated 21 March as World Down Syndrome Day, to be observed every year beginning in 2012, and invited, among others, Member States “to observe World Down Syndrome Day in an appropriate manner, in order to raise public awareness of Down syndrome”.
Efforts to promote the rights of persons with disabilities worldwide are laudable. However, discrimination against persons with Down Syndrome remains prevalent in many parts of the world, including Singapore, and manifests most notably in the context of abortion.
Abortion and Down Syndrome
In many places in the world, legality of abortion and the availability of prenatal testing has led to a high number of abortions in cases where there is a diagnosis of Down Syndrome in the unborn child.
In 2017, CBS News reported that, 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.
The report added:
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).
Iceland’s Ministry of Health, in seeking to clarify the facts on abortion and Down Syndrome, effectively confirmed the facts. In its 11 December 2017 statement, it wrote:
On average, 15-20% of women choose not to have screening of the fetus during pregnancy, while 80-85% undergo such screening. Screening only reveals whether there is an increased probability of the fetus having Down syndrome, and further tests are needed to confirm this. Some 15-20% of women who are informed of the increased probability of Down syndrome following screening elect to continue the pregnancy and decline further testing in this regard. On average, during the past 10 years 2-3 children have been born each year with Down syndrome in Iceland. [Emphasis added]
The notable part of the statement is the reverse side of the picture which it does not state explicitly, namely the 80-85% of women who choose to abort or choose to continue with further testing after receiving a report of increased probability of Down Syndrome.
To be fair, in many of these instances, the abortion of unborn children with Down Syndrome is not a matter of law or policy, but chosen by individuals who receive the prenatal diagnosis. In other words, the discrimination on the basis of Down Syndrome is a cultural problem, rather than a legal problem per se.
Singapore’s Abortion Law
“A disability of the unborn child alone is not a reason that would permit an abortion beyond twenty-four weeks of gestation,” Singapore stated in its initial report to the Committee on the Rights of Persons with Disabilities submitted on 13 July 2016.
While this is true, it is permissible to abort an unborn child prior to the 24-week limit on grounds of disability, including Down Syndrome, and after the cut-off date if the abortion is “immediately necessary to save the life or to prevent grave permanent injury to the physical or mental health of the pregnant woman”.
Statistics on Down Syndrome abortions are not easy to come by. According to available statistics, from 1993 to 1998, livebirth prevalence rate of Down Syndrome in Singapore fell from 1.17/1000 livebirths in 1993 to 0.89/1000 livebirths in 1998 “due to antenatal diagnosis and selective termination” (see “Pregnancy screening reveals Singapore’s double standard on Down Syndrome“).
In October 2014, when Member of Parliament Mr Alex Yam asked whether the Ministry of Health would consider lowering the terms within the Termination of Pregnancy Act to reduce the term limit from 24 weeks to 20-23 weeks, Senior Minister of State for Health Dr Amy Khor referred, among other things, to the fact that “a routine fetal scan is performed at 20 weeks gestational age, and this is at the stage where the foetus is sufficiently developed to enable structural abnormalities to be picked up from the scan”. She added that, “Keeping the abortion limit at 24 weeks will allow these mothers some time to consider the implications and make an informed decision as to whether to keep or abort the child, without being rushed to meet a shorter cut-off time.”
Slightly more than two weeks ago on 6 March 2019, during the Budget debates in Parliament, with Mr Yam and Dr Khor had another exchange on the matter. As recorded in the Hansard reports:
Mr Alex Yam (Marsiling-Yew Tee): Mr Chairman, I first asked in 2014 if the Ministry will consider adjusting the threshold of gestational age for abortion from 24 weeks to 22 weeks based on the increasing viability of even extreme preterm babies. I have made the same request consistently since then.
As early as in 1991, the viability limit defined in the Motherhood Protection Act in Japan was amended from 24 weeks to 22 weeks based on medical advances. I am certain that if we look at the numbers in our own hospitals , there will be similar medical justifications.
In Mandarin, Japanese and Korean, the written word for the womb translates to ” the palace of the child”. In Hebrew, the word Rakh’am is used to refer to the womb and translates to compassion and protection from harm. And I do hope that unborn children of Singapore will truly find it a palace for them to develop well and a place of mercy for them who do not have a voice.
I therefore repeat my request for the Ministry’s careful consideration, based on medical evidence, if a review of the gestational limit is due and an adjustment to the term limit be adopted.
The Senior Minister of State for Health (Dr Amy Khor Lean Suan): … [The] current cut-off of 24 gestational weeks for abortion was based on scientific evidence of foetal viability outside the womb. According to local experts as well as based on our hospitals’ experience, foetal viability below 24 weeks remain low. Furthermore, morbidities such as neuro-developmental disabilities are very high among the premature babies who survived.
International studies and professional bodies also largely support the low foetal viability below 24 gestational weeks. In addition, in 2018, it is worthwhile to note that about 1% of all abortions performed were performed between 22 and 24 gestational weeks, of which more than half of these abortions were performed due to foetal anomalies and other medical reasons.
So, essentially, the number of abortions below 24 but between 22 to 24 is already very low, and quite a large percentage is really due to medical reasons. So, what we have done, really, is also to work together with MSF to strengthen pre-abortion counselling and to raise awareness among these women with unplanned pregnancies of the options available to them including adoptions. MOH will continue to monitor and review this issue as new evidence emerges.
Although, unlike in 2014, there was no reference in this statement to the “routine foetal scan”, the discrimination against those with disabilities (which would include Down Syndrome) remains. As can be seen, one of the reasons to justify the 24-week cut-off date for abortion is because of “neuro-developmental disabilities”, and it was pointed out that more than half of the abortions between 22 and 24 weeks of gestation were due to “foetal anomalies and other medical reasons”.
The selective abortion of disabled unborn children is by far one of the most telling signs of how society fails to value not only the inherent dignity of these unborn children, but also the inherent dignity of those with disabilities as a whole.
As I have pointed out in a number of previous posts, this is an instance of Singapore’s double standards on the rights of persons with disabilities, and contradicts (at least the spirit of) its commitments under the United Nations Convention on the Rights of Persons with Disabilities, to which it is a party. (See, for example, “Foetal Viability and Foetal Abnormality: Wrong criteria and double standards in Singapore’s refusal to reduce 24-week abortion limit“)
Recognising Basic Dignity
In February 2019, Down Syndrome activist Frank Stephens appeared on “Fox & Friends”, after his earlier congressional testimony went viral:
He said:
About abortion – I don’t want to make it illegal, I want to make it unthinkable. Politicians change laws, I want to change people’s hearts. … I want to change people’s hearts by changing people’s minds and hearts together.
I would point out that we have to work to change laws and policies that entrench structural forms of discrimination against people. Apart from that caveat, I agree.
As I have pointed out above, the wider problem that leads people to abort their unborn children with disabilities often exists on the cultural level, where it is the hearts and minds of individuals or society as a whole that are prejudiced against people with Down Syndrome or other forms of disability.
The change, therefore, has to begin with each and every one of us, recognising the inherent dignity of all human beings and accepting persons with disabilities, both in and out of the womb. World Down Syndrome Day on 21 March every year is a step in that direction, but it is and certainly will not be the last step in this journey towards bettering ourselves and our society.
