After watching the debate on Insight regarding genetic screening I have to say that I am more concerned than ever about the increasing push to expand the reach of genetic screening onto unborn baby’s.
Among many of the issues raised but not discussed, were the questions of just what sort of message are we sending to children and adults who are currently living with disabilities or genetic conditions that are now openly being described both publicly and professionally as having diseases that are presumed to greatly diminish their quality of life?
Don’t such ideas fly in the face of all the achievements that those within the disability movement have fought so hard and long for?
Are we now to turn our backs on the rights of the disabled just because umpteen different variants of the human condition can potentially be screened for and eradicated before birth?
Two of the panel members debating this topic did indeed hold the distinction of having the very genetic conditions being labeled by other panelists as diminutive of their life.
Both disagreed with the underlying premise that having a disability or a genetic condition necessarily diminished their capacities to live a full and rewarding life.
Both flagged their contention over the possible harm such statements might cause to those already living with such conditions.
However, their further contention that viewing disabilities in this way may cause an erosion of the health care services that so many rely on to live their lives was significantly silenced by the story of a mother with a severely disabled child who stated that, if genetic screening had made her aware of her son’s condition prior to giving birth to him, she would have terminated him.
The question was then asked of her by one of the panelists with a disability, whether or not having better support and care services available to both herself and her son, might have made her change her mind, and decide that her son’s life would still be worth living.
To which the mother replied, that having better support services would make her life easier, but that they would not necessarily maker her son’s life any better. So no, the potential for having greater support services would not make her changer her mind on this issue.
As the mother of a much-loved son with Autism, I found myself torn by this debate.
My pro-active side wanted to agree whole heartedly with the need to pull back on the reigns of prenatal genetic screening and to scream at the protagonists who were all gung-ho for it, that my son, like thousands of others, although differently able, is still a sentient human being with loves and hopes and dreams.
A human being whose right to life is just as pertinent as anyone elses is.
Yet, when I looked more closely, there was another side of me vying for my attention.
The side of me that drank in and acknowledged that other mother’s pain at having to watch her severely disabled son suffer daily seizures and take in her anguish at knowing that her son’s genetic condition could have been tested for. That she’d even asked for it to be tested for, and yet that testing had not been carried out.
As a consequence of this she felt let down and betrayed.
Left with a life that she was not prepared for and was not of her choosing.
Yet despite this, her anger and sense of betrayal was not directed at her son,whom she loved and has devoted herself to caring for, but at the physicians in whom she’d placed her trust all those years ago.
To me this issue and the way it was presented begs oh so many questions.
If we place our reproductive trust purely in the hands of physicians then how do we know that we won’t all end up being betrayed?
If a woman, who has already decided that she is not willing or able to raise a disabled child asks for genetic screening, is she wrong to do so?
And if she’s not wrong, then why are we even having this debate about genetic screening in the first place?
On the flip side of the above thinking is the question of whether or not this is even an issue that can be succinctly condensed down into the auspices of a woman’s choice ?
Some how it feels as if it is an issue that is so much broader and more intricately embroidered within the more fundamental question of what it actually means to engage with the human condition in all it’s many and varied forms.
I cannot see how something so big could possibly ever be defined by the parameters of personal choice alone?
And if it ever is then what are we to think about the right to life?
Would that right to life then only apply to those who have a genetically screened and superior right to life?
Would we all begin to live in Huxley’s ‘Brave New World‘?
And what would happen to the disability care industry if our governments voted to open the flood gates on genetic screening? Would it slowly crumble and then fade away because hypothetically its potential for market growth would be destroyed? Leaving the thousands who currently already rely on and need that support floundering within an even more inadequate system of care?
Would it go from boom to bust with the stroke of just one bureaucratic pen?
Just where is the line in the sand to be drawn?
And what will that line, where ever it is placed, say about us as a society?
Will it define us as a society capable of holding more than one definitive way of valuing life of decry us as a race of Darwinian beings interested only in producing selectively superior progeny?
- Prenatal Genetic Screening – a parental obligation? (livingontilt.wordpress.com)
- We are all much more than the sum of our DNA (thepunch.com.au)
- Will genetic testing change life insurance? (pinnaclelife.co.nz)
- How genetic screening could work (telegraph.co.uk)
- New Guidelines on Genetic Screening of Kids Seek Bigger Role for Parents (sciencelife.uchospitals.edu)