In this series of articles, our medical students will discuss a range of topics from medical ethics to the NHS to public health to medical conditions to clinical governance
In the UK, several conditions are tested for during pregnancy. These are sickle cell anaemia, thalassemia, Down’s syndrome, Patau’s syndrome, Edwards’ syndrome. In this article, I am going to focus on Down’s syndrome, and the medical ethics behind testing for Down’s syndrome during pregnancy.
Down’s syndrome occurs due to Trisomy 21, which means the person has 3 copies of chromosome 21. It is possible to live with Down’s syndrome, with the average lifespan being 60 years. Children with Down’s syndrome will have delayed development (which means they will be slower at learning certain skills such as walking), will have physical characteristics and are at higher risk of certain medical conditions, such as congenital heart defects, issues with the gastrointestinal tract, hearing and vision problems and thyroid problems. The pre-natal tests done on foetuses to detect Down’s syndrome are not 100% effective, with there being several false positives and false negatives. On average, children with Down’s syndrome are more difficult to raise as it requires more effort and more engagement, due to the delayed development.
On pre-natal diagnosis of Down’s syndrome, about 90% of women now terminate their pregnancies. On top of that, there is an 100% termination rate for Down’s syndrome in Iceland!
However, regardless of all the health issues associated with Down’s syndrome, many people with Down’s syndrome go on to live very successful lives. For example, Coronation street has cast its first Down’s syndrome actor in 2015, called Liam Bairstow. The show producer Stuart Blackburn has announced that he is ‘really great actor with a wonderful sense of timing’. Liam has said that he hopes his story inspires many other people with Down’s syndrome to make the most of their talents.
So, if it is possible to live with Down’s syndrome and still be very successful, why are women still aborting their babies? According to the documentary ‘A World Without Down’s Syndrome’ (link below, it is a very interesting documentary!), once a woman has been tested positive for a baby with Down’s syndrome, the advice she is given next is crucial for the decision she makes. The Antenatal Results and Choices team are likely to be the first people the woman will talk to upon diagnosis. It is currently the only organisation that the NHS point women towards when they gain a Down’s syndrome diagnosis. Sally Phillips, who made the documentary, visited on of the members of The Antenatal and Choices team, and after making an example comment about being worried about the learning difficulties that come with Down’s syndrome, which she said is something a woman may ask, she was pointed straight to abortion, instead of being told about the extent that the learning difficulties can get to. From this example, we can see that not all the information about having a child with Down’s syndrome was given before the team member suggested abortion. This shows that one of the reasons why the rates of abortion are so high for Down’s syndrome is because not all the information is given out for the woman to make an educated decision.
This sparks the thought about the feelings of people with Down’s syndrome living now, hearing about the high rates of abortion of children with Down’s syndrome. Especially hearing about the 100% rate of abortion in Iceland, the people with Down’s syndrome living there must feel quite ostracised. A woman living with Down’s syndrome in Iceland called Halldora has written about how she feels, living in a country where the rates of Down’s syndrome are extremely low. She says that women aborting babies just like her makes her feel bad, as they have lives just like everybody else. She feels that people are coming after her life.
More and more accurate tests are being made to test for Down’s syndrome, and it is an issue that is largely debated. Our duty as doctors is to be non-judgemental, inform and advise the parents as necessary. At the end of the day, the decision is an incredibly difficult one and one that is made by the parents not the doctor.