Should we screen out people before they are born? If so, where is the line drawn? This question is passionately answered by people with down syndrome in campaigns such as the ‘Don’t screen us out’ in the UK but what is the situation in Australia.
Here, the federal government is presently considering whether or not to fund a controversial new prenatal test which will lead to a greater number of Down Syndrome babies being aborted each and every year.
The procedure, marketed as 'Harmony' Non-invasive Prenatal Testing (NIPT), can identify Down Syndrome, Edwards Syndrome and Patau Syndrome (trisomies 21, 18, and 13 respectively) in preborn children. Testing has shown some advantages over amniocentesis, the traditional procedure used to detect chromosomal abnormalities during pregnancy, because it is less invasive and more accurate.
Such a technical achievement is commendable in that it avoids the risk of miscarriage associated with amniocentesis and enables preparation for, and early treatment of, children born with trisomy disorders. However, advocates for people with disabilities are concerned about its use as a eugenics tool.
Their concern stems from the fact that babies suspected of having trisomy disorders are aborted at a higher rate than unaffected babies. While exact figures are not available, various studies report that between 67 per cent (the United States) and 92 per cent (Europe) of the babies in question are aborted.
The test costs about $500 and has only recently become available in Australia.
From as early as 10 weeks gestation, it can predict chromosomal abnormalities more than 99 per cent of the time. This is compared to an 87 per cent detection rate of Down's using the typical combined screening test involving blood samples and an ultrasound (nuchal translucency/NT) scan presently available to pregnant women.
At issue is the fact that, were the test to be made freely (and thus widely) available to expectant mothers via Medicare, greater numbers of babies suspected of trisomy disorders will be aborted as a consequence. This has sparked fears that the Down's community will face further depletion and ostracisation.
Whatever the potential benefits NIPT offers, there is little doubt it has been situated within a "preventative" eugenic paradigm rather than a "therapeutic" one. In other words, many doctors see NIPT functioning as an ancillary to abortion, not as a diagnostic tool focused on the healthcare of the child.
Furthermore, publicly funding NIPT will be expensive.
According to the Royal College of Pathologists of Australasia, which is applying alongside Roche Diagnostics to have the test covered by Medicare, it will cost the taxpayer an estimated $150 million annually.
One way of justifying this kind of expenditure is by assigning dollar values to people. Patrick Willems, chief executive officer of a Belgian laboratory offering Harmony NIPT, argued that publicly funding NIPT translates into a net economic benefit for the state. He argued that as a result of NIPT's higher detection rate and the subsequent increase in abortions, there will be fewer people accessing disability services. Therefore, any cost to the taxpayer for NIPT will be offset by the savings made to sector.
Given the financial constraints faced by governments at present, one can understand how administrators might find Dr Willems' argument rather tempting, however distasteful his logic.
But the very fact that such an argument is being made (although not readily admitted by most NIPT proponents) ought to be of real concern. Publicly funding NIPT is a question that extends well beyond how many children with Down Syndrome are born in Australia every year. It goes to the heart of who we are as a nation. Remember, these babies are definitely wanted before this new test confirmed a syndrome. It is time that we recognised that people with Down syndrome are a gift to society, and that they contribute to its enrichment in a variety of invaluable and unexpected ways.
We should welcome technological advancement but sometimes the cost to our nation should not be measured in dollars alone. Is aborting babies really the answer when we have adults living and learning and yearning for inclusion.
There are only a couple more steps before a decision to provide tax payer funding will rest with the Minister for Health, further information will be provided soon….