Material below published with courtesy from Abortion RIghts Campaign

https://www.abortionrightscampaign.ie/2017/12/22/prenatal-testing-facts-and-fears/

https://www.abortionrightscampaign.ie/2017/12/22/prenatal-testing-facts-and-fears/

Iceland and Down Syndrome: what the numbers really say

This post is part of a new series examining the intersection of disability rights and abortion rights.

It’s vital that people with disabilities are treated with respect and given the support they need to live with dignity and participate in society. It’s very concerning to see anti-choice spokespeople using the lives of people with disabilities as political footballs, and to see anti-choice myths about conditions such as Down Syndrome making their way into everyday conversation.

We acknowledge the genuine fears that people with disabilities have about stigmatisation of disability and erosion of rights. We hope that this new series of blog posts will go some way to addressing those fears. With that in mind, we thought we’d take a moment to address and debunk a particular myth that has been popping up in conversations for some time now.

You may have heard commentators saying that there are supposedly no births of babies with Down Syndrome in Iceland, and that this is supposedly because of disability-selective abortion. While mostly confined to anti-choice pseudoscience circles, sometimes these unsupported claims make their way into mainstream sources – examples include a BBC documentary from 2015, and more recently, a speaker at the Joint Oireachtas Committee on the Eighth Amendment.

One of our volunteers, John, a mathematician, decided to get to the bottom of it. Figures about births of babies with Down Syndrome in Iceland (and other countries) are easily available online from the World Health Organisation. Here’s what John had to say after examining the figures:

“The first thing you’ll notice is that the numbers of births [of babies with Down Syndrome in Iceland] are not zero, except in 1989 and 2009. The second thing you’ll notice is that the numbers vary a lot from year to year. There’s a good reason for that. The WHO reports cases per 100,000 live births. Iceland is a small country, even smaller than Ireland. Its current population is just 334,252 people. [For comparison, the population of Cork is 208,669!]

The total number of births each year in Iceland is almost always in the range 4000-5000. So a single baby with Down Syndrome contributes 20-25 to the rate, as reported by the WHO. The rate of 22 in 2012, for example, represents one child (1) [Please see the footnote for more information about how these rates are calculated].

The rates of zero in 1989 and 2009 aren’t so surprising then. With only a few births in a typical year there will none in some years.”

So the claims about Iceland not having any births of babies with Down Syndrome are clearly not true. What about the notion that Iceland’s rate is unusually low? According to John:

“[Using the WHO data] you can, for example, compare Iceland with other European countries. It’s better to compare the rates for a full decade, because of the year to year variation I mentioned earlier. In the last ten years for which the WHO provides data, Iceland’s rate was about 10% lower than the EU average. Scientifically, such a small difference can be considered random.”

It’s impossible to compare Iceland’s rate to Ireland’s as Ireland does not send data to the WHO on the number of babies born here with Down Syndrome. Other data sources tell us that in Ireland, about 1 in 600 babies will be born with Down Syndrome each year, and that there are approximately 7,000 people with Down Syndrome living in Ireland, out of a population that is estimated at between 38,000 and 66,000 people with intellectual disabilities.(2)

As adults, these people may form relationships, have children. They will find their rights restricted by the 8th amendment, as does every other pregnant person on this island. We will come back to that at a later stage. For now, let’s stay in Iceland.

As we’ve shown, a small amount of research, using publicly available data, shows that the two main anti-choice claims about Iceland are untrue. So why does the misinformation continue to flourish? John has some theories:

“Iceland is small, as was mentioned earlier. It doesn’t have an embassy here [in Ireland]. It isn’t in the EU. To be blunt, you can repeat lies about Iceland, even in the Citizen’s Assembly or Dáil Éireann, and expect to get away with it.”

As it happens, Iceland has noticed some of the lies being told about it recently. In August, an American TV report broadcast false claims about Down Syndrome and abortion. Hulda Hjartardóttir, chief of obstetrics at Iceland’s National University Hospital (who was misquoted in the piece) responded, thoroughly debunking the claims. Here’s what she had to say:

“The truth is that one third of mothers-to-be choose not to have more [pre-natal] tests done after the first indication of Down Syndrome. These women want to continue their pregnancies even with the increased chance of Down [Syndrome]. [Also], 80 to 85 percent of [pregnant] women choose to have the screening, so there are 15 to 20 percent who don’t. Those women don’t want the information. Of the women who have the screening and get results that point to increased risk [of Down Syndrome] about 75 to 80 percent get further tests done but 20 to 25 percent choose not to.”

Dr Hjartardóttir also noted that in cases of prenatal Down Syndrome diagnosis, “women and parents are offered the opportunity to meet with doctors and nurses who work with people with Down Syndrome. They are also offered the opportunity to meet parents who have children with Down Syndrome. No effort is made to pressure the women to make a certain decision.”

So there you have it: a far more nuanced and realistic state of affairs than that portrayed by anti-choice mythmakers. The experience of Iceland mirrors experiences elsewhere. At the Joint Oireachtas Committee meetings on the 8th Amendment on 22 November, Dr Eva Pajkrt, professor of obstetrics at the University of Amsterdam’s Faculty of Medicine, gave evidence that the number of babies with Down Syndrome born in the Netherlands has remained stable over the past few years, despite increases in the uptake of prenatal testing and the availability of abortion.

Dr Hjartardóttir’s statement and Dr Pajkrt’s testimony show us that Icelandic and Dutch women think about their lives, their families, and their resources while making their decisions – the way pregnant people do everywhere. The only difference between them and pregnant people in Ireland is the fact that they are able to make their private medical decisions without state interference.

In our upcoming posts we’ll talk about Ireland’s current record of supporting people with disabilities, and about some of the fears that people have around prenatal testing. We’ll look at some of the ways Ireland can make sure our future laws and medical practices respect the full variety of humankind.

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(1) Because the WHO needs to compare rates all over the world, including in countries with high populations and low populations, they convert everything into the same fraction, out of 100,000. In 2012, 4533 children were born in Iceland. 1 of these children had Down Syndrome. Because of the way the WHO needs to compare different countries using the same units, they converted 1/4533 into 22/100,000. Therefore, a single baby with Down Syndrome contributes 20-25 to the rate, as reported by the WHO.

(2) Ireland keeps a register of the number of people in Ireland who live with an intellectual disability who receive ‘health’ services (the NIDD), but we do not categorise people according to their particular diagnosis. The 2016 census actually reports far higher figures than the NIDD of people who self declare as having an intellectual disability (over 66,000).

Disability and Anomaly Scans

What is prenatal screening?

First off, what is prenatal screening? Its most basic function is to monitor the health and development of a foetus during pregnancy, and to provide information to doctors and parents-to-be. Anyone who has been through maternity services will know about the booking scan and the “big” scan. The first scan is done at around 13 weeks and is used to confirm pregnancy, to check for twins or more, and to check for conditions like spina bifida. The “big scan” happens at 20 weeks, again to confirm dates and to check growth. It is at this scan that many parents learn for the first time that their baby has a disability or a serious foetal abnormality.

Currently prenatal testing is patchy and even the recommended 20 week ‘big scan’ might not happen for some pregnant people. This is often due to lack of resources, according to AIMS Ireland, an advocacy group. For example almost all pregnancies in urban centres receive anomaly screening, compared to only 36% of those in rural areas.

Sometimes pregnant people in higher risk categories are offered additional testing to screen for genetic or chromosomal conditions like Down Syndrome. In Northern Ireland, screening is only offered in some hospitals but is recommended to all women over 35 in NHS guidelines. Private clinics have begun to offer scans and other diagnostic tests, such as Non-Invasive Prenatal Testing (NIPT), which can tell with 99% accuracy from a single blood test whether or not a foetus has a vast array of diseases, conditions and disabilities.

Prenatal testing will always be necessary, particularly for pregnant people with complicated medical histories. Tests and scans are essential for planning treatment during pregnancy and postnatal interventions in cases when a baby will be born with a serious illness or condition. At the Joint Oireachtas Committee on the Eighth Amendment recently, Gerry Edwards of the advocacy group Termination for Medical Reasons described how his 11 year old twin girls are alive today solely because of an anomaly scan. Clearly, prenatal testing is an important part of a modern, patient-centred healthcare system.

So where is the debate?

People who aren’t directly impacted in their daily lives by disability may not see the problem with all of this. However, disability rights campaigners feel their existence is being used and abused in the abortion debate, while some advocacy groups have been raising concerns that prenatal testing, if left unregulated, could open the door to automatic, deliberate screening for disability and referrals for abortion based solely on the existence of a disability, without proper consultation with pregnant people.

Different organisations take widely different approaches to resolving these fears. Most support the autonomy of pregnant people while also fighting societal prejudice against human difference. A minority take an anti-choice position and advocate directive counselling towards adoption only.

Denmark and prenatal screening

In our last blogpost, we showed that a common myth about Iceland and Down Syndrome is untrue. Similar claims are often made about Denmark, which are also untrue. However, the experience of prenatal testing in Denmark provides a useful example of how attitudes to disability have evolved over time.

In the 1980s, when prenatal screening was introduced, it was largely adopted without ethical review. In common with other countries, Denmark offered screening as a public health prevention programme with the intention of limiting the number of children born with disabilities. By the mid-1990s, research ethics committees had caught up with medical advances and the widespread use of screening was rolled back. Public attitudes to abortion varied quite widely, with a study at the time concluding that:

“it is impossible for physicians, and by implication for a national screening committee made up of healthcare professionals, to make decisions on such a controversial matter on behalf of a population.”

In other words: trust pregnant people to make their own decisions.

Banning screening or abortion violates a pregnant person’s right to reproductive autonomy and potentially life-saving treatments, while ignoring the additional circumstances that may cause someone to be unable to cope with a particular pregnancy.

Stigmatising attitudes to disability

Clearly, the situation in Denmark, as in Iceland, is not what some would have us believe it is. However, there are some issues worth teasing out here. The moment that someone receives a prenatal diagnosis can be quite overwhelming. People can feel very vulnerable in that moment. The attitude of the healthcare professionals giving the news can have a significant influence on how the pregnant person feels.

We also know that health professionals can have negative attitudes to disability, including in Ireland. Healthcare professionals (and parents-to-be) with little experience of what it is like to live as a disabled person may view disability, impairment and difference as undesirable rather than as a normal part of human variation. This can result in medical staff stigmatising certain conditions and assuming that people receiving a prenatal diagnosis of disability will not welcome the news, without asking them first.

This could have an impact, not only on pregnancy outcomes but on attitudes towards those who choose to continue with their pregnancies and those who live with disabilities. It’s clear that someone will always be ready to demonise the pregnant person, whether for choosing abortion or for ‘burdening the state’ with a child who will require healthcare and other supports. This is not reproductive justice.

Moving towards reproductive justice

So, what can be done to make sure pregnant people have access to all the information they need, while at the same time avoiding stigma and discrimination against people with disabilities? In Ireland, it is critical that as NIPT becomes more easily available, the HSE actively ensures the responsible use of prenatal screening.

Ethical principles should underpin practice, for example: making sure all staff are trained to deliver a prenatal diagnosis of disability in a kind and compassionate manner, making sure non-directive counselling is offered and that comprehensive information is provided about the supports available for babies born with disabilities.

As mentioned in the first post in this series, when a prenatal test in Iceland indicates a foetus has Down Syndrome, the pregnant woman or parents-to-be are offered the chance to meet healthcare professionals working with, and parents of, people living with Down Syndrome before any decision is made. Icelandic women can then make a decision based on their own needs and resources and those of their families based on the best information. The groundwork for similar support provision has already been done by the HSE in Cork through the Informing Families programme. It’s essential that this programme is rolled out nationwide to support the implementation of best practice when informing and supporting families of children with disabilities.

It is also essential that supports are properly funded across the disabled person’s lifespan, from healthcare to education, to housing to employment. All of these supports and interventions will help a pregnant person through the period of diagnosis and will help them to come to a considered decision. Equally, all of these supports must go hand in hand with referral for abortion services where it is requested.

The UN Committee on the Rights of Persons with Disabilities recently said that “laws which explicitly allow for abortion on grounds of impairment violate the Convention on the Rights of Persons with Disabilities (CRPD)”. It’s important to note that the Committee did not call for abortion more generally to be outlawed. Indeed, Article 23 recognises the right of people with disabilities to full reproductive and sexual autonomy. The best way to achieve this is not to restrict women’s access to abortion, or to either require or prevent women from undergoing prenatal testing. Instead, we should make sure that Ireland provides equal access to abortion for all pregnant people, including those with disabilities.

The law as it stands in Ireland forces a person to continue with a pregnancy when they don’t want to, and this is no solution – it is fact deeply wrong, not to mention totally unworkable. The only way to provide access to the range of care pregnant people may need while guaranteeing that people with disabilities aren’t stigmatised is to allow for abortion without restriction as to reasons. This is the only way to support women, to respect their considered decisions, and to ensure that people with disabilities are not harmed by the language or intent of the law.

The future

There is some good progressive work being done in Ireland around disability rights. As we’ll see in the third post in this series, we have a long way to go before we can say that people with disabilities here have the full and equal enjoyment of all human rights. By including people with disabilities in these discussions, we can find ways to improve on what has been learned elsewhere. If we do that there’s no reason why Ireland can’t become a model of inclusive and compassionate reproductive healthcare.

Guaranteeing sexual and reproductive health and rights for all women, in particular women with disabilities

Joint statement by the Committee on the Rights of Persons with Disabilities and the Committee on the Elimination of All Forms of Discrimination against Women

29 August 2018

The Committee on the Rights of Persons with Disabilities (CRPD) and the Committee on the Elimination of Discrimination against Women (CEDAW) welcome the continuing progress made by States parties to enable access for women, in particular women with disabilities, to sexual and reproductive health and rights. However, the Committees note with concern that there remain considerable gaps across all regions in the protection of these fundamental rights and freedoms and call upon States parties to increase their efforts in this regard. The Committees are also concerned at the increasing rollback and regression on respect for international human rights norms that threaten sexual and reproductive health and rights of women, including women with disabilities, who continue to experience intersecting forms of discrimination.

The Committees recall that gender equality and disability rights are mutually reinforcing concepts and States parties should guarantee the human rights of all women, including women with disabilities. As such, States parties have an obligation to respect, protect and fulfill the rights of women, including women with disabilities, in relation to their sexual and reproductive health and rights. States must ensure the enjoyment of their sexual and reproductive health and rights without any form of discrimination. Access to safe and legal abortion, as well as related services and information are essential aspects of women’s reproductive health and a prerequisite for safeguarding their human rights to life, health, equality before the law and equal protection of the law, non-discrimination, information, privacy, bodily integrity and freedom from torture and ill treatment.

CEDAW has emphasized that protecting women’s rights to sexual and reproductive health requires that “all health services […] be consistent with the human rights of women, including the rights to autonomy, privacy, confidentiality, informed consent and choice.” States parties should ensure non-interference, including by non-State actors, with the respect for autonomous decision-making by women, including women with disabilities, regarding their sexual and reproductive health well-being. A human rights-based approach to sexual and reproductive health acknowledges that women’s decisions on their own bodies are personal and private, and places the autonomy of the woman at the center of policy and law-making related to sexual and reproductive health services, including abortion care. States should adopt effective measures to enable women, including women with disabilities, to make autonomous decisions about their sexual and reproductive health and should ensure that women have access to evidence-based and unbiased information in this regard. It is also critical that these decisions are made freely and that all women, including women with disabilities, are protected against forced abortion, contraception or sterilization against their will or without their informed consent. Women should neither be stigmatized for voluntarily undergoing abortion nor forced to undergo an abortion or sterilization against their will or without their informed consent.

States parties should fulfill their obligations under articles 5 and 8 of CEDAW and CRPD Conventions respectively by addressing the root causes of discrimination against women and persons with disabilities. This includes challenging discriminatory attitudes and fostering respect for the rights and dignity of persons with disabilities, in particular women with disabilities, as well as providing support to parents of children with disabilities in this regard. Health policies and abortion laws that perpetuate deep-rooted stereotypes and stigma undermine women’s reproductive autonomy and choice, and they should be repealed because they are discriminatory.

In order to respect gender equality and disability rights, in accordance with the CEDAW and CRPD Conventions, States parties should decriminalize abortion in all circumstances and legalize it in a manner that fully respects the autonomy of women, including women with disabilities. In all efforts to implement their obligations regarding sexual and reproductive health and rights, including access to safe and legal abortion, the Committees call upon States parties to take a human rights based approach that safeguards the reproductive choice and autonomy of all women, including women with disabilities.

The Committee on the Elimination of Discrimination against Women (CEDAW) is the body of 23 independent experts that monitors implementation of the Convention on the Elimination of All Forms of Discriminatin against Women. The Committee on the Rights of Persons with Disabilities (CRPD) is the body of 18 independent experts that monitors implementation of the Convention on the Rights of Persons with Disabilities.

Glossary of Terms

Abortifacient - Substance or drug that causes an abortion.

Abortion on demand / request - When a woman can simply ask for an abortion, without having to give reasons or fulfil criteria.

Age of consent - Age at which it is legal to have penetrative sex (16 in the UK).

Back-street abortion - Abortion performed illegally and secretly, probably in unhygienic circumstances and without anaesthetic.

Carrying a pregnancy to term - Completing the 40 weeks of pregnancy and giving birth

Cervix - Neck of the uterus.

Conscientious objection - Moral objection (to abortion).

Fallopian tube - Tube from ovary to uterus.

Fertilisation - Conception. When the egg cell meets the sperm cell.

Fetus - Developing baby.

Gestation - Process of being carried in the uterus from conception to birth. The length of time a pregnancy has been going on.

Implantation - When the fertilised egg settles into the uterus wall.

Induced abortion - Abortion, the intentional ending of a pregnancy.

Infertility - Inability to produce offspring.

Informed consent - Consent given voluntarily, by a competent person, able to fully understand the benefits and potential risks of their decision.

Maternal mortality - Death of a woman due to pregnancy or birth-related problems.

Miscarriage - Natural ending of a pregnancy before the fetus is viable (see spontaneous abortion).

Obstetrics and gynaecology - Branch of medicine that deals with pregnancy, childbirth and the female reproductive system.

Pessary - Medication inserted into vagina.

Pregnancy - State of having a fetus in uterus.

Quickening - Moment when the woman first feels the fetus move.

Speculum - Device for opening vagina for medical purposes.

Spontaneous abortion - Miscarriage (see miscarriage). Still-birth Delivery of a baby/fetus that has died in the uterus.

Termination of pregnancy - Abortion, the intentional ending of a pregnancy.

Trimester - First, second or third period of three months of a pregnancy.

Uterus - A hollow muscular organ located in the pelvic cavity of women and female mammals in which the fertilised egg implants and develops. Also called womb.

Vagina - Passage leading out from uterus. Birth canal.

Viability - Point at which a fetus could survive outside the woman’s body.