After being brushed off by the Minister of Health, the Ministry of Health and the Human Rights Commission, a group of parents of Down syndrome children, and the pro-life organisation Right to Life, have applied to the Director of Human Rights Proceedings, Robert Hesketh, to represent them in an action against the Government over its antenatal screening programme for Down syndrome.
If Mr Hesketh decides the group has a case against the Ministry of Health and its National Screening Unit, he will take it to the Human Rights Review Tribunal. The group's spokesman, Whangarei engineer Mike Sullivan, has been advised by Mr Hesketh's office that a decision on that will be made in the first quarter of next year.
The group's action results from the introduction in February this year by the Ministry of Health - without public consultation - of the "Antenatal Screening for Down Syndrome and Other Conditions Quality Improvements" programme following advice from its National Screening Unit.
The parents group's action is based on the belief that antenatal screening for Down syndrome violates article 2 of the United Nations Convention on the Prevention and Punishment of the Crime of Genocide because it imposes measures intended to prevent births within a specific human group; that it discriminates against people with Down syndrome; and that it is in violation of the Crimes Act 1961.
Article 2 of the convention defines genocide as any act committed with intent to destroy, in whole or in part, a national, ethnic, racial or religious group as such, one of which is by imposing measures intended to prevent births within the group.
The others are: killing members of the group; causing serious bodily or mental harm to members of the group; and deliberately inflicting on the group conditions of life calculated to bring about its physical destruction in whole or in part.
(When the new Government-funded screening programme was announced, the Health Ministry said it was not about reducing the number of babies born with Down syndrome. But Cabinet papers obtained by the parents' group under the Official Information Act stated that the outcomes of the programme would be a reduction in the number of births of babies with Down syndrome, with some 90% of unborn children diagnosed with the condition being aborted.)
The parents group submits that people with Down syndrome are a stable and permanent group of people, genetically linked through all having a third 21st chromosome and share the same physical characteristics. Thus, they can be defined as both an ethnic group and a racial group.
In its submission on discrimination, the group says that the presence, form, presentation and management of the antenatal screening programme "sends a clear message to people with Down syndrome that their lives are not valued and reinforces discrimination towards them".
This issue had been raised with a complaint in June to the Health and Disability Commissioner. In a formal response received last month, the commissioner said that "the option of screening should be presented in a way that is not discriminatory towards people with Down syndrome".
He found that the screening unit's information sheets "could be more comprehensive and accessible" and had written to the Director-general of Health suggesting improvements to the unit's information resources and that his office would be involved in any revisions.
On the question of whether the antenatal screening programme is lawful under the Crimes Act 1961, the parents group points out that under that Act abortions are excused for rare and serious reasons. In relation to fetal abnormalities, the Act states that an abortion may be authorised where "there is a substantial risk that the child, if born, would be so physically or mentally abnormal as to be seriously handicapped".
"Down syndrome," the group submits, "is not a serious handicap. It is internationally recognised as a mild to moderate developmental delay. Our view is that aborting an unborn child based on a diagnosis of Down syndrome is a crime under the Crimes Act 1961."
The group asks Mr Hesketh to also take into consideration, among other things, that: genocide is one of the most serious of crimes on which humanity must unite to prevent and punish; resolution of the complaint will affect a large number of people, particularly those with Down syndrome, as a distinct group of people; the level of harm involving the matters raised is very serious, being the selective abortion of unborn children diagnosed with Down syndrome and the reduction in number of their births, as a distinct group of people; and the issue of genetic screening affects fundamental principles and values of life and requires widespread public debate.
It is not a matter for the NSU to decide on without a public mandate or with the exclusion of people with Down syndrome in matters that affect them.
As the father of a Down syndrome son who is now in his mid-40s, I wholeheartedly concur with the parent group's aims and arguments. And I pray that Mr Hesketh will decide to use his considerable legal talent on their behalf.
• Garth George is a retired editor. He lives in Rotorua.
