Is it fair to bring a child into this world with a hereditary disability?
Jono is afflicted with Treacher Collins Syndrome, causing a deformed face, as his facial bones are not developed as they should, and a hearing problem. As a baby he was given up for adoption because his parents could not cope. He is operated many times and as a child he was bullied a lot.
The couple has a 50 per cent chance of having a baby with this hereditary disease.
The abnormal gene causing this disability is known and the couple is considering IVF with pre-implantation genetic diagnosis, which means that the embryos are tested before implanting an unaffected one in the womb. This procedure is very controversial and Jono and his girlfriend are facing a huge dilemma, because if his parents had chosen to do this, he would not be alive.
Personal comment:
Risking to be seen as a monster, I believe that Jono should use the special IVF procedure. Bringing a child into this world, knowing it will face painful operations is very egocentric. Jono has first hand experiences; he should know better. The techniques are there, so use them. Especially because you can not predict how severe the disability will be. Disabilities are not a bad thing, but if there is a way to prevent them, I believe we should use those possibilities. I think it is cruel to willingly risk having a baby who you know will suffer a lot before he or she has a chance to live a life without pain and suffering.