Saving Downs was established in 2010 to advocate for people with Down syndrome in relation to genetic screening. This was our reaction to the 2010 “quality improvements” to the New Zealand national screening programme for Down syndrome. The eugenic nature of that programme was exposed in the 60 Minutes documentary “Down but not out” in 2011.
Our Mission Statement is:
“To ensure that antenatal screening exists only to provide unborn children with Down syndrome and their parents with life-affirming, unbiased care through education, support and understanding. “
To achieve this we:
- Raise awareness around the discriminatory and eugenic nature of the practice of antenatal screening in New Zealand;
- Provide a balanced perspective on life with Down syndrome;
- Give support for parents with a prenatal diagnosis; and
- Advocate for social justice.
We are actively advocating a number of specific changes to the antenatal screening programme, including:
- Policy changes to ensure that genetic screening is solely directed towards life-affirming care;
- The provision of independent advocates for parents to ensure that wanted pregnancies are supported, and to prevent medical bias towards terminations;
- Government funded positive public messaging to address discrimination towards our community; and
- Repeal of “foetal abnormality” as a grounds for abortion in New Zealand, as this discriminates against our community.
To achieve this social justice work comprises of a number of significant initiatives:
- Submissions to the Health and Disability Commissioner (H&DC) and the National Screening Unit (NSU);
- A group submission before the Human Rights Commission (HRC); and
- A complaint before the International Criminal Court (ICC).
Submission to the Health and Disability Commissioner
In 2010, a complaint from Saving Downs was upheld by the H&DC on the unbalanced quality of information produced by the NSU in relation to the antenatal screening programme for Down syndrome and other conditions.
In response to that complaint being upheld, the NSU agreed to revise the consumer resources and health practitioner guidelines associated with the programme. Draft revised guidelines were completed in March 2012 and issued to invited parties for comments. Saving Downs made detailed submissions on these.
The revised consumer pamphlet and guidelines were issued in February 2013 and Saving Downs secured a number of important and welcome changes to the national screening programme. The most significant change is the policy move away from the routine offering of screening for Down syndrome to all pregnant women to simply advising them of the availability of screening: see our press release here. Overall, there is a new emphasis towards the help and guidance available for mothers and their pregnancies throughout the screening (and diagnostic testing) pathway: see our detailed blog about the changes here.
Submission to the Human Rights Commission
Saving Downs and the Spina Bifida Association of New Zealand met with the Chief Commissioner of the HRC in October 2011 to discuss our concerns relating to the practice of antenatal screening. The Commissioner agreed to formally receive our expert legal opinion on the application of the Convention on the Rights of Persons with Disabilities (CRPD) in relation to antenatal screening for disability.
Seven organisations resolved to formally support the submission including Down Syndrome International and the New Zealand Down Syndrome Association. The group submission requested the HRC to develope an action plan where there are areas of conflict between the screening programme and the CRPD. The HRC have reviewed the submission and are currently developing a work plan around bio-ethical issues and disability that will incorporate this work. Read about our submission here.
The case before the International Criminal Court
Saving Downs lodged an application with the ICC in June 2011 against the New Zealand Government’s screening programme for Down syndrome. A formal preliminary examination into our complaint was launched in July 2012.
The basis of the complaint is that the screening programme targets unborn children with Down syndrome and other rare conditions such as Spina Bifida for birth prevention. New Zealand is signatory to the Rome Statute, under which the ICC operates. The persecution of an identifiable group of the civilian population through birth prevention is prohibited under the Statute. We consider that the Down Syndrome community is protected under these provisions of international law.
Key aspects of our complaint are:
- The emphasis is on the intent and consequences of the screening programme;
- Genetic screening and selective abortion is the means of birth prevention;
- Birth prevention is funded and facilitated by the NSU;
- The Down syndrome community is being targeted through their biological identification in-utero and their births prevented; and
- We are seeking resolution of our complaint without prosecutions.
The complaint references government cabinet papers obtained under the Official Information Act stating the outcomes of the programme 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 terminated. The programme is promoted and funded by the government at a cost of $9.4M per year, or around $75,000 per unborn child with Down syndrome.
In November 2012 the ICC indicated that additional facts and information are required to enable them to have jurisdiction to proceed with further analysis. The provision of this is dependent on the outcome of the HRC’s work in response to the group submission outlined above.