THE WAR ON DOWN SYNDROME

Pre-natal screening: where is the debate?

At the very least there should be a democratic debate on targeting Down syndrome babies for destruction.
Stella McLeod | 16 December 2010
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Recently I was interviewed by our local newspaper because my husband, Stephen, and I are involved with other parents in challenging the New Zealand government over an ante-natal screening programme for Down syndrome, introduced earlier this year. Two of our three daughters are adopted and also have the extra 21st chromosome.

The reporter, who has a little niece with Down syndrome, was keen to draw me out on the joy these children can bring to our lives, although, having just had our 15-year-old daughter throw another girl's cell phone into a lake during a class outing, I wasn't feeling overly joyful about her behaviour. All the same, it is true that raising our girls has brought us plenty of joy, lots of hugs, and life is never dull.

New Zealand, like many other countries, has had antenatal screening for Down syndrome for some time, offered primarily to older mothers, with abortion as an option. So a year ago when I read that screening would be offered to every pregnant woman, I knew it wasn’t going to be safer for the babies and probably had more to do with an earlier abortion being considered safer than a later one.

At that point, the most commonly used method of screening in New Zealand was a risk assessment based on a nuchal translucency scan (NT, referring to the thickness of the skin at the back of the baby’s neck) and/or maternal age. Those with an increased risk result were then offered an invasive diagnostic test, usually amniocentesis - sampling of the amniotic fluid surrounding the baby, which has a risk of miscarriage. Other methods were sometimes used, but there was no consistency.

But already a 2006 report by Professor Peter Stone and Diana Austin said that screening so far had “failed to reduce the numbers of babies born with undiagnosed Trisomy 21. This can be due both to failure to offer screening and/or the false negative rate of current screening processes”. They also said “more normal pregnancies may be adversely affected by amniocentesis than the numbers of Down syndrome fetuses detected.”

I should add that Dr Stone, Professor of Maternal Foetal Medicine at Auckland University, has played a leading role in the development of pre-natal screening in this country. His views as an advocate of both screening and abortion have been pivotal, I believe, in rejecting the option of using funding to better the lives of those with disabilities and instead using it to give women “reproductive autonomy".

Improving the "detection" rate

So what exactly is the “improvement” in New Zealand antenatal screening? The new regime, now offered to all pregnant women, consists of combined NT and maternal serum screening in the first trimester, or alternatively the serum screen alone in the second trimester. If the screening result is positive, invasive diagnostic testing is offered: Chorionic villus sampling (CVS) of the placenta during the first trimester and amniocentesis during the second. CVS has a higher miscarriage rate than amniocentesis.

To question officialdom about the nature of screening in this country is to get into a war of words about whether it really is a “national screening programme” (not, they say) and whether the aim is to reduce the number of babies born with Down syndrome -- again denied. Yet a 2007 advisory group admitted that the option they recommended “has the potential to exacerbate negative attitudes towards disability. It is also likely to result in a reduced incidence of Down syndrome, despite this not being one of the purposes of screening.” One admitted purpose was “reproductive autonomy”, which extends to “the ability to make decisions concerning continuation or termination of pregnancy when the fetus has Down syndrome.” Other reports also anticipate a high rate of abortion following diagnosis; a rate of 90 per cent is cited -- the level reached in Britain and the United States.

In news coverage about the “quality improvements” it was frustrating that reporters uncritically accepted the need for screening, so did not write about the implications for unborn babies, their mothers and people with Down syndrome. I debated the issue on the TV3 news website, and six months later joined an online discussion group. Here I met other New Zealand parents who are also passionate about the injustice of antenatal screening targeting babies with Down syndrome. A member used the Official Information Act to establish the true aims of the programme and some of us are supporting a complaint of genocide against the New Zealand government.

But why are health professionals and politicians so keen on stamping out this disability? The brutal answer is, “Because it is more cost effective.” Down syndrome is a common cause of intellectual disability (usually moderate) and may also involve heart, or other medical issues. People affected by this syndrome live relatively long lives (on average 60 years) so it is cheaper to detect and abort them than to pay for their health, education and welfare needs for years to come. I find the cost-benefit calculation cold-blooded and insulting.

The screening conveyor belt

Babies with Down syndrome and most of the other rarer conditions targeted are detectable because they have an extra chromosome. The majority cannot be treated before birth and there is no way of knowing precisely what any individual’s needs and abilities will be.

No doubt many mothers would like “reassurance” or to “be prepared”. This is very understandable, but once on the screening pathway I think parents will discover that the pathway will be more akin to a conveyor belt if they are considered “high risk” after initial screening. Only if they are very certain that they do not want to risk the possibility of a miscarriage or would not have an induced abortion will they be able to resist the temptation to have further testing, hoping that the initial result is wrong, as it will be in the majority of cases. Sahin Aksoy says the medical profession acknowledges that “antenatal diagnosis is a rational activity only if abortion is seen as an acceptable alternative.”

Despite this, patient information leaflets produced by the National Screening Unit are not forthright about the basic reason for screening. Even the FAQ page does not ask or answer the question, “Why do I need antenatal screening?” Abortion is not mentioned in the first two leaflets. Only after initial screening has shown an “increased chance” are the following options given in a separate leaflet: “Some people wish to know ... so they can prepare for the birth and for family life. Others may wish to consider adoption or a termination of the pregnancy. You may choose to do nothing more and wait until the baby is born.”

There is an interesting, and sad, contrast between these leaflets and the ones for HIV. The leaflets about Down syndrome screening show no pictures and are similar in appearance to the antenatal screening for HIV leaflet intended for women who are having an abortion. However, the HIV leaflet for women intending to carry their baby to term has photos of happy families and smiling babies. There is no such leaflet for women at any stage of the Down syndrome screening pathway.

Many parents around the world have shared their experiences of antenatal screening first hand. Matt kept a diary from the time they got the test results until his son’s birth, and shares the emotions he and his wife went through deciding whether or not to have an abortion. Victoria Lambert chose an abortion when she discovered her son had Trisomy 13 and now lives with the regret. Amy Julia Becker, who has a daughter with Down syndrome, chose not to have screening and explains why. C.H. was willing to carry her baby to term but had an abortion because her husband didn’t want a child with a disability.

These are the real life experiences that those who make policy decisions on antenatal screening ignore and the fact that parents are being psychologically traumatised.

Where are we going with this programme?

Moreover, some of this trauma is completely unnecessary, even if one were to accept the logic of “preventing” Down syndrome births. Frank Buckley of the UK website downsed notes, “Babies who have Down syndrome are more likely to be naturally lost during pregnancy than babies who do not have Down syndrome...” The rate of loss is about 20 per cent. This is an important consideration. There is a huge difference between a baby dying naturally through miscarriage, or after birth, and being killed by induced abortion.

On the other hand, the idea that termination is the reasonable and humane “norm” can lead to a sense of injustice if a diagnosis is missed. Thus wrongful birth lawsuits add to the pressure on doctors and midwives to offer screening.

One hopeful development is that even some professionals have misgivings about antenatal screening. In an essay published online late last year, a British pathologist involved in screening argued that it was time for society to decide exactly where it wants to go with such programmes. Timothy M Reynolds raised a lot of issues, including wondering whether “Down’s screening [has] been promoted because the patented immunoassay tests have a good profit margin” and whether “Down’s syndrome screening is merely the start of our problems”. After all, “Developments in genetics mean that soon all babies will be able to have their entire genetic code mapped at birth, as soon as the barrier of public acceptability has been overcome”.

Reynolds concluded his article: “It is essential that we as a society urgently debate and decide precisely what we wish to become... Just because we can do something, it does not mean we really ought to do it.”

I am all for that debate. My fight against antenatal screening is not just for the sake of our children, born and unborn, with Down syndrome and other conditions but for parents who are being traumatised in order to meet dubious economic and eugenic agendas.

Stella McLeod writes from Rotorua, New Zealand.

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