the value of life?

I came across an article titled "Should my hereditary disability stop me having a baby?" on BBC News. Here are some excerpts:

At the age of 26, Jono is happy with how he looks, but the genetic disorder that affected the way his facial bones developed in the womb has caused him years of anguish.

His condition means he has no cheekbones - so his eyes droop downwards - and he has problems with his hearing, so has a bone-anchored hearing aid.

It has resulted in years of bullying, several operations and numerous hospital visits. It also led his parents to give him up for adoption 36 hours after he was born.

But perhaps the most vital factor for Jono and his long-term girlfriend, 20-year-old Laura Richardson, is that it is also hereditary, so any child Jono fathers naturally has a 50% chance of having Treacher Collins.

[...] 

"I've always dreamed of being a daddy. I crave father and son moments - my adoptive mum was absolutely amazing but I never had a father figure in my life, and that's something I really, really want. I want to do the school run, take my child to dance, gymnastics or football - whatever they want."

But for the couple - and particularly Jono - the thought of having a child naturally opens a minefield of morals, emotions and self-questioning.

"Knowing that there's a good chance of passing your condition on to your child. It scares me and I question whether it's the right thing to do.

"The big debate in my head is how can I knowingly put my own child through potential suffering," he says.

Is it "right" to conceive a child, knowing that you, in all likelihood, will give him or her a hereditary physical, or even mental, defect? Is it "right" to bring a child into this, let's be honest, cruel world, knowing how much harder his or her life will turn out?



No one should deny the hardship, the inconvenience, the frustration that those with disabilities have to face in their lives. It is a simple fact that one with a physical or mental defect has to endure immense difficulties to go about his or her daily life. Let's not obfuscate this simple reality for the sake of some high and mighty principle.

But a hard life does not mean a miserable life. One can lead, and many have led, a meaningful and happy life despite physical and mental defects. Look at Jono from the BBC article, for example. He has risen above his physical disability, and found the love of his life. Hardship does not equal misery. Many stare straight into the face of difficulty and see opportunity.

Back to the question I posed. Is it "right" to bring a child into this cruel world, knowing that you will give him or her a hereditary defect, and all the difficulties that come with it?

Maybe it is inappropriate, or foolish, to frame this issue in terms of "right" and "wrong"? The situation has both the positive and the negative infused within it. The potential parents must recognise that they will bring their child into a difficult life, and must be absolutely certain that they can help that child through the hardship, that they can become a sustaining force for him or her to endure the cruelty of our world. They must understand, that while some parts of our society strive to create a community that gives equal opportunities to everyone, others resist this progression, making the world we live in a subtly hostile place for people with disabilities. It is their decision, and they should only make it once they understand and acknowledge the consequences, the risks, and the responsibilities that will accompany the choice they make.

Our job as a society is not to judge, and moralise, and stir an intensely personal decision into an ideological battle, a controversy with clearly defined "rights" and "wrongs" the same way we treated women's reproductive rights. We need to realise that no one understands the life of a person with disabilities better than a person with disabilities. They, equipped with the best information and understanding of their situation, will make the most suitable decisions for themselves.

There is also the issue of bioethics, of whether it is "right" to terminate an embryo of a genetic defect is detected. I shall not address that issue in this post.