Following TV3’s 60 Minutes documentary on June 12 “Down but not out”, parents of children with Down syndrome announced they will lodge a complaint with the International Criminal Court against the Governments screening programme for Down syndrome.
The basis of the parents’ complaint is that the Government’s antenatal screening programmespecifically targets foetuses with Down syndrome and other rare genetic conditions, through the prevention of their births.
The 60 Minutes documentary was introduced with the statement “people with Down syndrome may soon disappear from the face of the earth.” 60 Minutes revealed the new screening programme was introduced without public consultation and the Ministry of Health “did not bother” asking the opinion of anyone who has Down syndrome, about the programme.
Mike Sullivan, father of three-year-old Rebecca Sullivan who has Down syndrome, featured in the 60Minutes 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.”
De-Anne Jensen, mother of three with her oldest son having Down syndrome also featured on 60Minutes. “Government documents say it costs less not to have children with Down syndrome around, so it looks like they are working to do away with Down syndrome. It’s cheaper; you don’t have to pay for the special needs things. The Government and medical experts are putting a monetary value on our baby’s lives,” Mrs Jensen said.
The parents’ 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 persecution of an identifiable group of the civilian population through the prevention of births is specifically prohibited under the Rome Statute of the International Criminal Court, to which New Zealand is signatory.
The group is supported by parents with other disabilities that are being similarly targeted and other organisations who support their concerns.
The groups position statement is that genetic screening must not be used to prevent the birth ofunborn children with Down syndrome, or cause harm to any unborn child.
The group recognises genetic testing may help some parents prepare for the birth of a child with Down syndrome. Any testing must respect the life and integrity of the unborn child, cause no harm, be only directed towards safeguarding or healing the unborn child and be presented in a way that does not discriminate against people with Down syndrome or any disability. Any testing must be developed in full engagement with those with Down syndrome.