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Down's Syndrome Early Screening

Cross poster from the Culture Vulture

Last week this blog featured a couple of posts on the issue of prenatal screening, which of course resulted in a slew of comments about the nature of this screening and the resulting abortions of people with Down syndrome that it leads to in the vast majority of cases.

One of the interesting issues that was raised during the course of those discussions was whether the use of screening for Down syndrome was a problematic act in and of itself, or whether it was merely the aborting of people with Down syndrome that accompanies the screening that is actually the issue here.

I think it’s actually a bit more complex than that, because while asking the question about whether the act of testing for a particular genetic condition is unethical or not is an important thing to ask, focusing only on that aspect of the discussion misses other questions, such as ‘is it necessary?’ or ‘when should it actually be carried out?’, which are questions which also have an impact on the question of whether we should be carrying out early screening for Down syndrome.

Some people have suggested that early screening for Down syndrome empowers the parents of an unborn child by providing them with knowledge about their child, thus enabling a batter standard of care for the child, and appropriate support for the parents in this specific caring role.

I think the empowerment of parents is a good thing, however I am not at all convinced that early prenatal screening is actually necessary for parental empowerment – why wouldn’t a test at birth achieve the exact same outcome for parents?

Is there anything unique and pressing that a baby with Down syndrome needs at birth that a baby without Down syndrome doesn’t? If not, then why can’t the test wait until birth?

This idea of parental empowerment is tied closely to the very recent fascination with the notion that we should be ‘managing’ every pregnancy, but I have yet to be convinced that good ‘pregnancy management’ requires early screening for Down syndrome.

Does knowing that your child will be born with Down syndrome actually make the scenario of being a parent of a child with Down syndrome any easier to come to terms with?

Doesn’t it actually create more pressure on the parents, who, while the child is still hidden from sight within the womb, are far more likely to fall prey to unrealistic fears and imaginings that would otherwise be quickly dispelled if the child was actually there to see, hold and touch when they received the diagnosis?

It’s also important to remember that invasive tests such as amniocentesis carry very little risk to the baby if they are carried out much later in a pregnancy.

All of this leads me to conclude that the primary reason for promoting early screening for Down syndrome is to provide a window of opportunity for eugenic abortions to be carried out – apart from reducing the risks to the baby from invasive testing, this is the only thing of any substance that actually changes if you shift the testing process to a point much further down the track.

I had the privilege of being at a bioethics colloquium in Australia earlier this year where this particular issue was debated, and one important point that was raised was that of ‘disproportionate risk’, and it’s impact on the ethics of screening.

Now usually when people think of the issue of disproportionate risk and screening they think of it in relation to the risk caused by the testing (i.e. ‘is there a serious risk of harm to mother or the baby from the test itself?’), but this completely misses the disproportionate social risks of providing early screening for Down syndrome.

You see, when early screening for Down syndrome is made available, there is a disproportionate risk of death to persons with Down syndrome (approximately 85% of people with Down syndrome are now aborted as a result of this screening), and this needs to be considered when evaluating the merits of the act of screening.

When push comes to shove I am yet to be convinced that there is any genuine need for Down syndrome screening to actually take place early in a pregnancy, and therefore I am not at all in favor of the current screening programme, which I think could be carried out much later if, as its advocates claim, eugenic abortion really isn’t a key aspect of this programme.

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