A worthy life – testing for Down’s Syndrome

16th January 2016

What makes a life worthwhile? What makes a life worth living? Can we assess the worthiness of another’s life for them?

Does it come down to what an individual earns? Where they live? What their IQ is? Perhaps it should be based on what they contribute to society, or maybe a worthy life is one in which the individual is happy and fulfilled.

In the 1930s, a widespread eugenics programme was underway in Nazi Germany, a programme which had begun in the United States. Eugenics sought to rid society of those who were deemed ‘life unworthy of life’. It saw hundreds of thousands identified as eligible for destruction; including but not limited to prisoners, those considered to be ‘degenerate’, dissidents, people with congenital cognitive and physical disabilities (including the ‘feebleminded’, epileptic, schizophrenic, manic-depressive, those who had cerebral palsy or muscular dystrophy, were deaf or blind), homosexual, idle, insane, and the weak. The programme aimed to remove these traits from the gene pool, in Germany this was to further purify the Aryan race.

A horrific period of history which saw lives needlessly and aggressively ended. One that is undefendable.

So why, in 2016, do we find ourselves allowing assessment of what is ‘worthy life’ whilst that life is still in the womb?

We live in a diverse and eclectic society. A mix of cultures and backgrounds. Some people are naturally very bright and academic, some may struggle with traditional academia but are, perhaps, incredible artists. Some people find themselves drawn to expressing themselves through music whilst others find themselves achieving on the sports field. Everyone has different goals, dreams and passions.

What would our society look like if everyone behaved the same, looked the same, thought the same? If you stop studying at 16, does that make you less worthy than someone with a doctorate? If you need a little extra time to learn how to walk, to talk or to read, does that make you less worthy than someone who learns quickly and at a pace that society deems is ‘normal’?

I don’t think so.

This week there has been plenty of debate about the new non-invasive test for Down’s Syndrome. It is a test that carries less risk of causing miscarriage than the current amniocentesis procedure which takes a sample of genetic material from around the developing baby. Unarguably, a test which is less risky to life than the current procedure has got to be a positive development.

However, when a positive result leads to abortion purely on the basis that the child has Down’s Syndrome, we begin to see a society which shuns difference. A test which promises to provide results without risk to an unborn child may seem more attractive for the expectant parents but headlines such as that from ‘The Daily Telegraph’ which state ‘Hundreds of babies could be saved after Down’s Syndrome blood test is approved for NHS’ seems to suggest that the sadness thus far has only been that some of the 350 babies a year (Friday 15th January edition) that miscarry after their mother has an amniocentesis did not have Down’s Syndrome, as opposed to looking at why society feels so unable to accept those babies that would have been born with the condition that were aborted due to a test result.

Latest figures state that 90% of babies that are prenatally diagnosed with Down’s Syndrome are aborted. The new screening procedure will detect 102 more babies with Down’s Syndrome every year which will lead to 92 more babies being aborted every year. Where are the headlines that express horror at this? Why is this not a balanced debate?

Some parents have no desire to end the life of their developing child, purely wanting to know in order to better prepare themselves for the arrival of a child who will need a little extra support. But rest assured, they are not sick. They are not diseased. They are not limited by their condition. They are limited by the perception and expectation of the society around them.

Some children with Down’s Syndrome may have other medical needs, but any ‘normal’ child may have other medical needs. A test won’t pick that up.

Some children with Down’s Syndrome may need a little more time to learn how to walk or to talk, but any ‘normal’ child might find they need a bit more time too. A test won’t pick that up.

Some children with Down’s Syndrome may need more support at school to overcome learning difficulties, but any ‘normal’ child may need extra help too perhaps having learning difficulties or delays such as Dyslexia themselves. A test won’t pick that up.

Some people with Down’s Syndrome may need help getting a job after they’ve finished school, but any ‘normal’ adult may also struggle to find suitable employment. A test won’t pick that up.

A fulfilled and happy life is hard to predict or to guarantee just on the results of a test. A child without Down’s Syndrome isn’t definitely going to grow up into a happy and fulfilled member of society. It is no more guaranteed than the assumption that a child with Down’s Syndrome won’t.

Photo of a misty sunrise

I know a 17 year old girl with Down’s Syndrome who has completed mainstream education, who is studying at sixth form college and who is looking at the options for leaving home to study away for three years. She is musical, creative and artistic with a wicked sense of humour. She regularly takes part in sport. She goes to a youth group, community activities and has an active social life.She has come through her teenage years with no greater level of tantrums than any other teenage girl. Her only health problem Coeliac’s Disease, could have affected her regardless of her having Down’s Syndrome. She adores her family and they, her. She contributes immensely to family life, to her friendship group, to her college and to the other communities she finds herself part of. She is happy, fulfilled and excited for her future.

It breaks my heart that this girl lives in a country who deem her as having a life not worthy of life. That would have denied her life entirely. That would deny her family, and the people that encounter her, the happiness of knowing her and of having her bring richness to their lives.  When she reads the news articles hailing it as a medical breakthrough and watches the news on Television to hear how Down’s Syndrome is something to be eradicated, how do we begin to explain to her that some people don’t think hers is a life worth living?  Thankfully she is surrounded by love and hope but it deeply saddens me that the negativity within society could have such a profound effect on her self-esteem.

The increased abortion rate that has been seen in countries where this test has been made readily available indicates that society would rather remove that which is unknown. What if the next trait that is found to be testable is homosexuality or perhaps pre-disposition to depression? Will more lives be aborted ‘just in case they are found to be not worthy’?

No parent wants their child to face any great challenges than they have to but life can’t promise anything. Providing an accepting, supportive society will have far greater benefit to all than providing a way to abort those that bring colour and diversity into our worlds.

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