Earlier this month I came across a blog indicating that the UK’s Department of Health is grossly under-reporting the true number of pregnancy terminations for Down’s syndrome. This raises a red flag because the accurate monitoring of birth and termination numbers is important for assessing the impact of national screening programmes on the birth prevalence of Down syndrome. It is a requirement under Article 31 of the UN Convention on the Rights of Persons with Disabilities.
The UK National Down Syndrome Cytogenetic Register (NDSCR) was set up in 1989. It holds anonymous data from all clinical cytogenetic laboratories in England and Wales of cases of Down syndrome diagnosed prenatal or postnatal. Its’ 2010 annual report was published in December 2011. The 2010 data is revelling. Of the 1,868 pregnancies there were: 715 live births (38%), 1,099 terminations (59%) and 54 still births/miscarriages (3%).
Such a high termination rate is a concern and is indicative of an underlying attitude of negative bias from the medical community and discrimination.
What is really interesting about this data though, is the breakdown between prenatal and postnatal diagnosis presented in Table 1: for the live births, 91% were diagnosed after birth and 9% prenatal, and of those diagnosed prenatal 93% were terminated and only 5% went on to a live birth.
Also, according to this 2009 report in the British Medical Journal the number of births of babies with Down syndrome in England and Wales between 1989/90 and 2007/08 should have increased by 48% due to increasing maternal age. Because of antenatal screening and subsequent terminations they increased by only 1%.
This all indicates that the national screening programme in the UK is mostly being used for the birth prevention of babies with Down syndrome, rather than birth preparation or life affirming care. So when we hear the spin about this being a health initiative, the reality is that it is rarely being used for any life affirming care, or birth preparation. This is not really a surprise. I have discussed before the absence of therapeutic benefit and the eugenic nature of national screening programmes for Down syndrome.
Here in New Zealand, there is a similar trend. Our Ministry of Health decided to stop collecting termination data at the same time the new screening programme was introduced in 2010. This makes it a little harder to track the impact of the programme and is a classic case of social engineering on behalf of our government. But by looking at the number of births of all babies and those with Down syndrome and then comparing these to the natural birth rate for Down syndrome based on maternal age (i.e. without prenatal intervention) we can get a good idea.
Using the available data the New Zealand termination rate is around 55% for all pregnancies involving Down syndrome (the comparable base termination rate for all pregnancies is 21%). Worryingly, the National Screening Unit has advised that approximately 55% of pregnant women commence screening, which indicates that almost all diagnosed cases are terminated and all births were not screened. I know this is not quite correct because I know of several mothers in New Zealand who had a positive diagnosis and went through to birth, but it is clear that these cases are rare.
The situation in the US is similar, as outlined in this excellent blog by the International Down Syndrome Coalition – what exactly is the termination rate for babies with Down syndrome? This indicates a 50/50 split of births and terminations for all pregnancies involving Down syndrome in the US.
Turning to the other European countries, a 2008 report by the pleasant-sounding EUROCAT (European Surveillance of Congenital Anomalies), maps out the state of prenatal screening in Europe in 2004. There is an excellent summary table here. For the 12 countries surveyed, the average termination rate is 60% for all pregnancies involving Down syndrome. The average termination rate, where there is a positive diagnosis is 88%.
In Switzerland 87% of all pregnancies involving Down syndrome are terminated. In France it is 86%. That is getting close to having little, or no, births of Down syndrome in those countries. (Their termination rates, where there is a positive diagnosis, are 91% and 96% respectively, and they have very high uptakes rates for screening).
In 2010 the delightfully named ICBDSR (International Clearinghouse for Birth Defects Surveillance and Research) carried out a study to assess the impact of elective terminations on the birth prevalence of Down syndrome - see page 8 of this report. The prevalence of Down syndrome at birth decreased in the majority of countries where data was available over a 16 year period.
The real message behind all the international data is that there is a widespread social view that the lives of those with Down syndrome are of less worth than their brothers and sisters. And that points to discrimination.
But it is more than discrimination. The data reveals a clear pattern of a widespread and systematic programme of birth prevention directed towards the Down syndrome community at an international level. That is why we have our case before the International Criminal Court, because this is persecution and eugenics against our community on a global scale. The impacts of this are likely to be significant if the situation is not addressed. Impacts could include the long-term adverse social effects on people with Down syndrome as their lives are devalued through selective terminations. This could lead to further insecurity and entrenchment of attitudes of discrimination towards them with the danger of a vicious circle of reducing birth prevalence.
The facts tell us that now is the time to act for social justice for the global Down syndrome community.