You have to feel for this bloke. He’s about my age, and I can say that my worst nightmare would be to know that Alzheimers is breathing down your neck and there’s nothing you can do about it. It is a fear that I sometimes experience in those moments when my memory is particularly vague, or when I find myself wandering around the home looking for where I placed my keys… but that is probably just the early onset of old age.
I must also say that when I read about his decision that this genetic disease “‘stops with me, that’s it”, I thought: You poor brave bastard. I grieve for you in your decision not to have children because of your concern that they might have to endure such suffering (or rather their families – dementia is a disease in which the person who has it does not suffer as much as the people who care for them) – even if such suffering might come after at least half a life-time of normality. I respected his decision. I understood his statement that “I would feel so guilty if I passed this thing on.”
I was grieved for his wife too. I don’t know how young she is, but surely she too thought when she married him that they would be able to look forward to raising a family. Instead she now has to plan for looking after her husband.
But then I read this:
They are trying, so far unsuccessfully, to have children through IVF. A technique called pre-implantation genetic diagnosis, or PGD, can be used to screen out embryos carrying the bad gene.
My eight year old daughter, on hearing me explain this story to my wife, quoted Dr Suess: “A person’s a person no matter how small.”
So, we now live in a society where it is seen as ethically unacceptable to bear a child who might (even almost certainly might) have a genetic disease which leads to dementia in the second half of their life, but it is perfectly okay to destroy (ie. end the life of) an embryonic human being who is found to have the genes that will lead to this condition.
I will mention here a fact that came to my attention recently. A student of a local Catholic Secondary College brought home an exercise from her science class in which the class was learning about the genetic causes of Down’s Syndrome. The class was asked to read a newspaper article which bemoaned the fact that despite the availability of pre-natal screening, few expectant mothers were availing themselves of this technology, and hence there were many children being born with the disease who could have been eliminated before birth (that wasn’t, of course, how the article put it, but that is what it said).
The exercise ended, after asking a number of questions about chromozones and what not: “Why is it a good idea that all expectant women have pre-natal testing?
When did we cross this line, folks, when the unthinkable became thinkable?