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.
I think it is amazing that it is possible to save a person from those types of diseases. On the other hand, nobody is perfect and who are we to play god. So I understand that Jono has a very difficult choice to make. But I think I would probably try to shield my unborn child from harm by making sure it is healthy.
BeantwoordenVerwijderenThe idea that it is possible to erase these flaws of nature is scary on the one hand but a blessing on the other hand. It is difficult to pinpoint what is tolerable and what crosses the line. The Treacher Collins Syndrome causes a horrible disfiguring of the face and hearing problems and I wish no one had to bear this but what if the gene responsible for cross-eyed or ADD is found?
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