I've asked Mike Sullivan, board member of IDSC for life and spokesperson for Saving Down syndrome, to guest blog for me today. This post is a bit technical, as compared to what you'll typically read here on A Perfect Lily- but I hope you will take the time to read about how other nations are implementing the new tests we've been talking about. I do understand that we live in America, but I think it's important to be cognizant of what is happening in today's culture regarding how Down syndrome is viewed, and what steps are being taken it to "prevent" it.
As I've done in the previous posts in this series, I am including photos that have been shared by readers. We can talk until we're blue in the face about choice and ethics and statistics, but what each of these photos represents is a life...a life that has beauty and value, a life lived with Down syndrome.
Saving Down syndrome
by Mike Sullivan
The impact of voluntary screening programmes for Down syndrome: The New Zealand and Denmark situations and the case for crimes against humanity.
“People with Down syndrome may soon disappear from the face of the earth.''
This was the introduction to the 60 Minutes documentary ”Down but not out” that aired in New Zealand in June 2011. 60 Minutes revealed that the new “quality improved” antenatal screening programme would reduce the population of people with Down syndrome in New Zealand through disability selective abortion. The “quality improved” programme was introduced in February 2010, without public consultation.
Savingdowns spokesman, Mike Sullivan, was featured in the 60 Minutes documentary. He said people with Down syndrome and other disabilities are human beings who live full and rewarding lives. “They must be treated on an equal basis with other members of our society, without any form of discrimination.''
Savingdowns and Right to Life NZ lodged a complaint with the International Criminal Court (ICC) against the New Zealand screening programme in June 2011. The basis of the complaint is that the programme specifically targets and persecutes unborn children with Down syndrome and other rare genetic conditions, through the prevention of their births. This is in effect, an act of genocide and a crime against humanity, under Articles 6 and 7 of the Rome Statute. The Rome Statute forms the basis of operation of the ICC. The Court has confirmed that the complaint is being considered. New Zealand is party to the Treaty of Rome and is bound to comply with any ruling from the ICC.
The emphasis of the ICC complaint is on consequences and intent, with genetic screening and selective abortion being the means. The intent is to identify unborn children with Down syndrome, Spina Bifida and other conditions so that births to the group can be prevented. The consequence is that a substantial part of the group is being systematically destroyed.
Antenatal screening for Down syndrome has operated in New Zealand since 1968. It was initially introduced with no public debate or parliamentary direction. Prior to the “quality improvements” around 54% of unborn children with Down syndrome were being aborted. (In 2008 there were 62 abortions performed where Down syndrome was noted as present and 53 live births).
The Ministry of Health has been unable to provide abortion numbers involving unborn children diagnosed with Down syndrome post “quality improvements” as these statistics have not been collected since 2008. This means that evidence of the numbers of abortions due to the “quality improvements” will no longer be available. The effect will need to be estimated from the remaining birth numbers.
Cabinet papers obtained under the Official Information Act state that the outcomes of the “quality improvements” will be a reduction in the number of births of people with Down syndrome, with around 90% of unborn children diagnosed with the condition being aborted.
Item 28 of the Memorandum to Cabinet dated 23 October 2007 stated:
“There is the potential for activities associated with improving the quality of antenatal screening for Down syndrome to have a negative impact on people with disabilities, including:”....
.... (Fourth bullet) ”decrease in the number of babies born with Down syndrome. International experience suggests that as a result of screening and diagnostic tests, up to 90 percent of women who receive an antenatal diagnosis of Down syndrome will choose to terminate their pregnancies.”
In practice the total abortion rate can be expected to be around 78% as not all women will participate in screening.
The best international evidence available in terms of the consequences of the organised screening can be found in the 2008 Danish study “Impact of a new national screening policy for Down’s syndrome in Denmark: population based cohort study”. The objective of the report was “To evaluate the impact of a screening strategy in the first trimester, introduced in Denmark during 2004-6, on the number of infants born with Down’s syndrome”. This report is directly relevant to the “quality improved” programme in New Zealand. Both countries use identical procedures and the relevant numbers are almost the same. Both the Danish and New Zealand programmes are state funded and voluntary and replace the traditional screening programmes that involved ultrasound scans and invasive diagnostic tests. In 2006 in Denmark there would have been 135 infants with Down syndrome expected to be born in a population of 65,000 live-born infants if the mothers had no prenatal intervention (i.e. abortions). In New Zealand the respective numbers are 125 and around 60,000 live births.
As detailed in the Danish study the introduction of a combined risk assessment during the first trimester at a national level in Denmark in 2004 – 2006 halved the number of infants born with Down syndrome and halved the number of invasive diagnostic tests.
Based on the above Danish experience, New Zealand can expect that the number of births of people with Down syndrome to decrease from around 53 per year to 26 per year, with the number of selective abortions increasing from around 62 per year to 93 per year. The overall abortion rate for all Down syndrome pregnancies in New Zealand can now be expected to rise from around 54% to around 78%. The first full year of actual birth numbers following the “quality improvements” will be published in June 2012.
This is the likely impact of the state funded voluntary screening programme for Down syndrome in New Zealand - an overall abortion rate of around 78% of all pregnancies.