Prenatal Testing: Facts and Fears

This post is part of a new series examining the intersection of disability rights and abortion rights. Read the previous post “Let’s Talk About Iceland” here.

It is important that as we debunk myths around abortion, we also address the genuine concerns that people may have around certain aspects of abortion law reform and discrimination on the basis of disability. In this post, we outline how free, safe and legal abortion is the only way to provide full care for all pregnant people without further stigmatisation of disability.

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 the Irish 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 fatal foetal abnormality.

Currently in Ireland, 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 Dublin 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 Ireland, this screening is not offered to everyone as the procedures can be invasive and there’s a risk of miscarriage. In recent years, 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.