Wednesday, December 06, 2006

Unbelievable!

I read this article in the NYT and I found it quite astounding. I hardly come across news items that are totally shocking or where I am just not able to understand the other person's perspective. If the news is about some horrific act commited by someone, it will be so horrific that you can surely conclude that the person is not a normal person otherwise. And there are so many weird things you read about in the news that you hardly even find those news items shocking. But this was something I could not understand. This is the gist of what my rant is about:

The article reviews the use of preimplantation genetic diagnosis, or P.G.D., a process in which embryos are created in a test tube and their DNA is analyzed before being transferred to a woman’s uterus. In this manner, embryos destined to have, for example, cystic fibrosis or Huntington’s disease can be excluded, and only healthy embryos implanted.
Yet Susannah A. Baruch and colleagues at the Genetics and Public Policy Center at
Johns Hopkins University recently surveyed 190 American P.G.D. clinics, and found that 3 percent reported having intentionally used P.G.D. “to select an embryo for the presence of a disability.”
In other words, some parents had the painful and expensive fertility procedure for the express purpose of having children with a defective gene. It turns out that some mothers and fathers don’t view certain genetic conditions as disabilities but as a way to enter into a rich, shared culture.


I absolutely cannot understand this. One of the commenters (if you read the comments section) has expressed anger that people have spewed so much venom against people with defects - I think she has completely misunderstood those comments - it is not that people are expressing anger towards people who are born with defects and have learnt to live with it - I do think in fact at least the people who have commented here are all possibly people with compassion for those who endure and overcome such difficulties - the anger is towards parents who would intentionally choose to have children with defects. It is like saying "I was abused, I learnt to deal with it and learnt so much from overcoming it and am so much the richer for it, hence I plan to abuse my child too". Extreme as it sounds that's how I feel . How can you intentionally choose to have a baby with cystic fibrosis? It is not about your (the parents) choice, your ego but it is about what the child has to endure for life without ever having had a choice about it. When a CF child is not able to breathe freely and is enduring so much pain, is the parent going to think, well I made the right choice for my child?! This is tantamount to abuse even before birth in my opinion. Even if you take dwarfism, which one may argue is just about height and society just has to learn to deal with the difference - it is not just that - there is much more to it - people with dwarfism may also be affected by a lot of other health problems related to it. I feel if parents want to live in a shared culture where their child too has a similar defect they could adopt such a child. I can understand wanting your own child but why would you decide to control the child's health - it is not just about what soceity accepts as normal - but there is a very perceptible thing called pain that any person with any health defect has to endure. Both physically and emotionally. The comments from readers are varied and very interesting because you find a lot of people with health problems who feel offended by any opposition to this. But there are also quite a few people who have been born with genetic defects who have written that they would definitely not intentionally do that to their child. What I found really unbelievable was that there are doctors who are willing to do this and that it is legal to do this. But then again when I think about abortion - which is actually killing a fetus - which is worse? It is very hard to say. If I think of a life time of suffering for a child I suppose I would find abortion acceptable - depending on the nature of the illness. Some are really painful and debilitating and some are just a matter of teaching the child to cope with the difference. Either way I am not able to understand an intentional choice to create a child who would be born with a genetic defect.

5 comments:

Rohini said...

Why would someone do that!! Why would you subject your child to a lifetime of pain and suffering just so that you can claim the badge of being a parent. It makes me sick...

the mad momma said...

This is quite ridiculous. I can't think of any better way to put it. On the other hand there is the growing argument against any form of selection while implanting embryos. Choosing gender will cause skewed sex ratios. And there are others who after implanting find that all the embryos are unhealthy or carry some genetic defect, so discard them and try again. There is a whole lobby against this too... against discarding those that are unhealthy and sending out the message that unhealthy or handicapped people can be discarded or dispensed with. At the end of the day I have a problem with messing with nature. This is what comes of it. After a point the whole damn situation gets so murky that there are no rights and wrongs and ethics and principles go out of the window. every technology or advance brings with it such complications... makes me feel scared for having brought my child into this world.

noon said...

Hi Rohini, Exactly how I reacted when I first read this. I am still not able to understand this...

noon said...

Yes, I agree - more so after reading this article I have been thinking about the whole issue of genetic manipulation - at what point do you draw the line? And who decides? Really it is the decision of the parents when it comes to raising a child - I have been mostly pro choice although sometimes when I find people misusing abortion I feel there should be some restrictions on who can get an abortion..(someone I know had 5 abortions after having two children because her husband and her both refused to give in a get an operation done - I don't understand why they could not use better protection - made me sick when she casually told me about this many years later - she was only regretful because all those abortions made her very fat!). It is so hard to even decide if abortion in the case of a debilitating illness for the baby is ethical...but this intentional choosing of defective embryos is something I am not able to come to grips with - goes against everything one intuitively thinks normal parents wish for...I assumed every normal parent prayed for a healthy baby more than anything else!

Tharini said...

Hi Noon....haven't seen any updates from you in quite a while. Post soon. Happy Holidays!