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Fixing the System Against Down Syndrome Prenatal Testing

 

The proposal last autumn to introduce the non-invasive prenatal test for Down syndrome, known as NIPT, on the UK’s National Health Service from 2018 has sparked a reaction within both the Down syndrome and the medical communities. Creators and many medics hail the test as offering women the chance to know with 99 percent certainty if their baby will be born with the genetic condition, while avoiding the previous invasive test. Reactions to the news have been both positive and negative, but also seem to be largely divided into two main groups: those with medical experience and those with personal experience of Down syndrome.

One of the allegedly major benefits of the NIPT is that mothers to be will know with almost 100 percent accuracy if their baby has Down syndrome, without the risks associated with the current amniocentesis test. Amniocentesis involves taking a sample of the amniotic fluid around the baby, not only is it less accurate, but it also carries a chance of inducing a miscarriage. The creators of NIPT argue that thanks to the availability of the new test, women will no longer have to take this risk. Yet, women were never forced to undergo this test, it has always been optional. However, the high numbers of women opting for it, despite the risk, demonstrates how a one percent chance of losing the baby is worth taking in order to be sure if the baby has Down syndrome.

 

Defenders of NIPT have argued there’s no evidence its introduction will lead to an increase in the termination of Down syndrome pregnancies, yet a large percentage of mothers whose babies are identified as having Down syndrome using the former prenatal test decided to terminate their pregnancy. In Iceland, where the test is already available, the termination rate is now 100 percent. There have been 3,213 abortions carried out on grounds of disability since 2015 alone, 689 of these were Down syndrome cases. Surely this is evidence enough that if more mothers are able to determine risk-free if their child has the condition, the number of babies born with Down syndrome each year most likely will begin to decline. The fact that 230 of these terminations were carried out after 24 weeks, the usual cut-off point for an abortion in the case of a non-disabled baby —  a 271 percent increase since 1995 — demonstrates the lack of equality disabled people have even before birth.

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