Testing Times

“A World Without Down’s Syndrome?” is the title of a well-publicized BBC TV program first aired across the UK in late 2016. It was fronted by Sally Phillips, a popular actress and mother of a son with Down syndrome who set out to critique the use of noninvasive prenatal testing (NIPT) for fetal anomaly and, more specifically, to probe the ethical questions surrounding a decision to terminate when Down syndrome is detected. The program includes a powerful segment filmed in Iceland; it is a dystopian vision of a country where the live birth of babies with Down syndrome is almost zero since the introduction of NIPT. Denmark’s high termination rate following a positive prenatal diagnosis is used in a similar way—to conjure the specter of eugenics, and all the historical baggage that term necessarily carries with it, as a means of condemning abortion decisions made after NIPT results are confirmed. Pope Francis made the connection explicit: “In the last century the whole world was scandalized by what the Nazis did to treat the purity of the race. Today we do the same, but with white gloves.”

Since 2012, we have seen the widespread international implementation of cell-free DNA screening techniques for Down syndrome, commonly known as NIPT. It involves a simple maternal blood draw. This test is now well-established in the private sector, and public health systems are gradually adopting the procedure as a much more reliable way of assessing the chance that a fetus has Down syndrome. NIPT is not diagnostic but, unlike conventional methods, an NIPT screen is rarely wrong. This accuracy creates fewer “false positives,” which results in fewer women undergoing unnecessary diagnostic procedures that carry a small but always significant risk of miscarriage.

The rise in the use of NIPT is of concern to many families and advocates for those with Down syndrome as they believe that this more reliable method of testing will become standard, and women will undergo this test as a routine part of pregnancy. And, as statistics tell us that most women who receive a prenatal diagnosis of trisomy 21 decide to end the pregnancy, there is a fear that Down syndrome may be eliminated.

Why might a better method of screening, offering more accurate information to those who want it, be viewed as controversial? The answer is simple: testing might lead to abortion. Some warn of “soft eugenics” and the tacit role of the state in the decimation of the Down syndrome community. Even some prochoice activists admit unease at this “selective abortion”—a choice to terminate not because you do not want a baby, but because you do not want this baby, a baby who will live with a disability.

The antitesting lobby is critical of clinicians, accusing them of championing NIPT and subsequent termination. Many stories circulate of doctors assuming that women will terminate a pregnancy following certain test results or actively encouraging them to do so to avoid the burden of raising a child with a disability. The Church of England waded into the debate earlier this year, voicing concern about rising termination rates. The church’s national adviser on medical ethics, the Reverend Dr. Brendan McCarthy said: “While it is obviously always a woman’s choice . . . our hope is that, with full information . . . provided in the ways that we have been mentioning, significant numbers of women will choose to continue with their pregnancy.”
Of course, we must be vigilant in ensuring that women are in no way pressured to make a specific decision; they must have access to up-to-date information on Down syndrome that includes knowledge from those with lived experience. And, too, we must always call out poor medical practice, but our experience at the UK-based charity Antenatal Results and Choices (ARC) with parents and professionals does not suggest that this is a widespread problem. It also does a disservice to women and their agency to imply that they are passively ending what began as wanted pregnancies at their doctors’ behest.

Those of us on the prochoice side must not retreat from this complicated debate because it is too controversial, too ethically charged. Standing up for choice following prenatal diagnosis means supporting both those who choose to end and those who choose to continue their pregnancies after absorbing the information offered by NIPT.

What is overlooked in that BBC program and in the many subsequent debates it spawned is that Iceland has a population of just over 330,000. There are approximately 4,000 births a year, and Down syndrome will affect around 1 in 800 of those. This means that only a handful of diagnoses of Down syndrome will be made each year. Prenatal screening is not mandatory, so it is only those who choose screening who may go on to have a diagnosis and then terminate. Suffice it to say, it is misleading to extrapolate from this small population that we are facing the end of Down syndrome worldwide.

Indeed, if we look elsewhere in Scandinavia, we find that termination rates in Finland, Norway and Sweden are far lower. Moreover, two major peer-reviewed research studies suggest that the introduction of NIPT in the UK later this year could actually lead to more women deciding to continue a pregnancy following positive test results, as the relatively safe nature of NIPT offers women timely, accurate information that they can use to prepare for the challenges associated with trisomy 21 without the risk of miscarriage associated with more invasive testing methods. Regardless, the fact is that women will continue to make choices congruent with their own values and circumstances.

ARC simply provides women with more information on which to base their decisions, and we offer support both to women who choose to terminate a pregnancy following NIPT and those who choose to continue to term. For most of our 30 years in the field, this approach has been uncontroversial. That is no longer the case. We have recently found ourselves center stage in the furor surrounding prenatal testing for Down syndrome. ARC has faced fierce criticism in the media and regular attacks on Twitter and Facebook. Health professionals are discouraged from referring women to us. Numerous complaints have been made to government officials about ARC’s support for testing and “bias” towards termination. We have seen a substantial dip in donations to our charity.

The Politicization of Down Syndrome
“All life is precious, don’t screen us out.” This slogan from Don’t Screen Us Out, a lobby group in the UK, serves as a good example of how the antichoice movement uses Down syndrome to problematize abortion. The group’s spokeswoman has a daughter with Down syndrome, but also happens to be a longstanding member of the Society for the Protection of Unborn Children—a Catholic antichoice organization. Don’t Screen Us Out uses compelling images of children with Down syndrome to provoke alarm at the idea of widespread prenatal testing and associated abortion. They employ arguments that the prochoice side can find hard to counter. How can we discriminate against people who are simply different? If you disagree with abortion for race or gender, then how can you countenance abortion for Down syndrome? What does it say about our society if we accept screening out children who are deemed less than “perfect”?
Such emotive tactics were used in campaigns to retain the Eighth Amendment in the recent referendum in the Republic of Ireland. Billboards appeared across the country featuring Joseph Cronin, a young boy with Down syndrome, accompanied by a statement that, in Britain, “9 out of 10 babies diagnosed with Down syndrome are aborted” and a plea to not let the same reality befall Ireland.

However, not all advocates for people with Down syndrome were comfortable with this campaign. Down Syndrome Ireland was prompted to write a letter in the Irish Times in the lead-up to the referendum, outlining its concern at the politicization of Down syndrome by certain campaigners: “This is very disrespectful to both children and adults with Down syndrome and their families. It is also causing a lot of stress to parents. People with Down syndrome should not be used as an argument for either side of this debate.”

How Can the Prochoice Movement Respond?
This conflation of disability-advocate and antichoice arguments is now hard to untangle. In his recent opinion piece in the New York Times, Chris Kaposy, professor of bioethics and author of Choosing Down Syndrome: Ethics and New Prenatal Testing Technologies (and father of a child with Down syndrome), states that he is prochoice and opposes the legislation being debated in several US states that would ban abortions motivated by a Down syndrome diagnosis. So far, so good, but his article concludes with a heartfelt plea: “If you value acceptance, empathy and unconditional love, you, too, should welcome a child with Down syndrome into your life.” What does this say to a woman facing a positive prenatal diagnosis of the condition? It says that if you are a good person, there is only one morally correct choice open to you.

How can we stand up for choice against such persuasive arguments? Well, first we must ensure that NIPT remains a choice free from societal or, especially, governmental pressure to test. We must also help women negotiate the complexities and potential pitfalls of the proliferating private sector (it is a multi-million-dollar industry). Women who receive a positive diagnosis must have access to accurate, objective information about what living with Down syndrome can mean. They need to know that—as with any child—there will be joys, but there will be challenges, too, and that these may not be insignificant. And then, finally, they must be supported in whatever choice they decide to make.

The women and couples we hear from on the ARC helpline consider what a diagnosis of Down syndrome might mean for their child, themselves, their family and their future. No prenatal test can predict the level of learning disability their child might have. They worry about potential associated health issues. They know that many children and adults do well, but also know that some have extra difficulties and the possibility of this plays a major part in their decision making. Most often, their pregnancy is very much a wanted one, and the last thing that they ever imagined was thinking about termination. It is always a painful decision.

Many expectant parents we speak to have personal experience with Down syndrome through family members, friends or work. This often makes the decision to end their pregnancy extra hard, because they care very much about the people in their lives with Down syndrome. They simply know it is not something they want their child or family to have to cope with.
We know from our support work at ARC that women and their partners do not take the decision to end a pregnancy lightly after a diagnosis of Down syndrome; we also know that they are able to live with their decision. The choice they make is not about devaluing those who live with the condition, but is instead about what the prospect of having a child with Down syndrome means for their own individual lives. The current politicization of Down syndrome just makes an already difficult decision even more fraught and distressing.

Those of us on the prochoice side must not retreat from this complicated debate because it is too controversial, too ethically charged. Standing up for choice following prenatal diagnosis means supporting both those who choose to end and those who choose to continue their pregnancies after absorbing the information offered by NIPT. Choices informed by prenatal diagnosis are not made in a cultural vacuum, and being prochoice should also mean being inclusive and empathic towards those living with disabilities and their families. We must accept that the Down syndrome community may feel uncomfortable about prenatal testing and its outcomes and always be respectful of and sensitive to their concerns. While some of us will struggle with the choices others make after prenatal diagnosis, we must always remember that their lives are not ours. Therefore, we stand firm in our support of everyone’s right to choose what is best for them as dictated by their own individual circumstances, rather than the agenda of others.