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Maybe the answer lies right at the start
of life, in our maternity services. When
you are pregnant in the UK, you get
offered two routine scans during your
pregnancy. These are an exciting
opportunity to take a sneak peek at the
tiny human growing inside you, a moment
that can bring you to tears. During the first
scan, at 12 weeks, you will be asked: “Are
we doing the combined screening today?”

In the court of public opinion,
people with Down syndrome
are viewed as burdensome

and people to be coped with

Around 80% of women in the UK
choose to have screening. Screening gives
you your chance of having a child with
one of three trisomies – Down syndrome,
Edward’s syndrome and Patau’s syndrome.
If a woman receives a high chance result, differentiate the time limit for abortion Screening for other genetic conditions is
she is offered amniocentesis or chorionic based on genetic difference. It is no longer within the realm of science
villus sampling (CVS), which are diagnostic demonstrated through our media, where fiction. The science is outpacing the ethics,
tests that tell you definitively. Then you a storyline that normalises termination of and we desperately need a public debate
are given a choice: do you want to pregnancy following a Down syndrome on this, for the benefit of everyone.
continue the pregnancy or terminate? diagnosis is perceived as completely We proclaim that as a society we
Our best estimates show us that 90% acceptable – regardless of the hurt and believe that everyone deserves a fair and
of pregnancies with a prenatal diagnosis offence it has caused a minority equal chance at life, regardless of their
of Down syndrome end in termination. If community with protected characteristics. background – but is this true? As a society,
this diagnosis is made, you can terminate Women are not being given the correct are we comfortable with prenatally
that pregnancy right up to birth whereas information to make an informed deciding what type of a life is a life not
the time limit for a typical child is decision. There are websites and support worth living?
24 weeks. groups out there who can give you the l Educating Emmerdale, the Down
These statistics are going only in one balanced view. But when you are syndrome community response, is on
direction. With the advent of non-invasive experiencing anguish, resentment, and a Facebook at https://tinyurl.com/y8h7f29q
prenatal testing, the number of foetuses sense of loss for the baby you thought you
detected with Down syndrome will were having, it is so very hard to find this Máire Lea-Wilson is mother to four year
increase and so will the termination rate. all out for yourself. old Tom and 20 month old Aidan, who has
Figures released by 26 hospital trusts in Down syndrome
England under freedom of information Screening: who benefits?
laws show that the number of babies This raises the question; who is really
being born with Down syndrome has benefiting in this scenario? It certainly is
fallen by 30% in NHS hospitals that have not people with Down syndrome. As
introduced prenatal screening. fewer people with Down syndrome are
In 2017, Iceland hit the headlines when born, it will surely decrease their
it was claimed that through a “successful” opportunities, in terms of both social
screening programme, it had managed to acceptance and funding and research into
“eradicate” Down syndrome. Eradicate. improving their medical, educational, and
Think about that word. We aren’t talking social prospects.
about curing a disease here. We are Does it benefit expectant parents? I
talking about the systematic elimination shudder to think what could have been
of a type of a person. had I made a different choice. Instead of
From the moment of conception, women having my beautiful, funny and loving boy,
are being subtly – and sometimes overtly what would I have been left with?
– conditioned to view Down syndrome as Does it benefit society at large? As we
something to fear and to be avoided. make further progress in the science of
It is demonstrated in the language used genomics, we will be able to “predict” the
– “risk”, “abnormality” and “problems”. It future of more and more individuals
is demonstrated in our laws, which before they are even born.

www.cl-initiatives.co.uk Community Living Vol 34 No 3 | Spring 2021 29