Why having Down syndrome is not a 'choice' but the systematic eradication is

11/06/2016 11:11 am ET

The Guardian quickly changed the headline of it's recent article “New prenatal test for Down's syndrome will not lead to more termination”, when the statistician that was quoted in the article complained. The new headline reads: “Fears over new Down's syndrome test may have been exaggerated, warns expert”, but the content remains the same.

‘Choice’ has become the magic word

The article, like many others that appeared lately, focuses on statistics and how the new non-invasive test will help decrease the number of miscarriages which result from invasive testing like amniocentesis or CVS. And sure enough, when you compare old invasive test methods with the safe and technologically advanced NIPT (Non Invasive Prenatal Test) you will end up with a positive argument for implementing the NIPT into NHS. However, the root question remains unanswered: WHY do women systematically need to be offered testing for Down syndrome? Buoyed by medical and social advances Down syndrome certainly is not the serious life limiting condition that would justify being the target of a National screening program 'Choice' is the answer to this question. And those who dare to question it are immediately accused of being anti-choice.

We can all agree however, that having Down syndrome is not a choice. Neither is being a woman, or a man, being colored, transgender, having a different sexual preference, a high IQ or short legs. The only choice we have is to prevent the births of babies based on any of these human traits. And while NIPT can potentially detect a range of genetic (chromosomal) conditions, microdeletions and duplications in an unborn child, it is focused mainly on detecting Down syndrome. That is a choice.

The new Down’s Syndrome test could save money, say British obstetricians. And money drives the screening debate. If a woman was truly given a free choice to determine for which conditions she wants to screen her pregnancy this could possibly lead to sky-rocketing costs: not just testing but also counseling on all the hundreds of conditions would be an impossible, and costly, task.

Gender-selection is discrimination but Down-selection is freedom?

And then there are the ethical consequences. When in 2015 researchers announced that the 'gay-gene' was identified, advocacy groups around the world warned against homophobic use of this discovery. There is also great International outrage about the sexist character of femicide (gender-selection) in parts of India and China. In many countries this has lead to laws that prohibit gender-abortion. The backdrop of the gender-selection ban is that children should be free and equal. They should not be 'reduced' to mere objects of the desires and wishes of their parents.

Those who hide behind ‘choice’ do not grasp the concept of freedom

Unfortunately, the Guardian focuses another article on the individual 'freedom' to say 'yes' or 'no' to the finance-led, governmental decision to single out Down syndrome as the target of the new testing. Those who continue to hide behind 'choice' do not fully grasp the concept of 'individual freedom'.

I think the Guardian, as a quality newspaper, should not only change it’s headline to “Fears over new test are justified” but also publish a new article. This time they should focus on the role of government and pharmaceutical industry in determining our ‘individual freedom’.

Renate Lindeman is the spokesperson for Downpride and representative of Saving Down syndrome. These are International social justice groups that, together with UK’s Don’t Screen Us Out campaign, promote awareness and equality for people with Down syndrome.

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