Friday, October 28, 2011

What Would You Do?

New prenatal test accurately detects Down syndrome, but should parents use it?

Read the article here. (Warning: cute kid alert, proceed at your own risk).

A business has developed a test that can detect Downs' Syndrome as early as 10 weeks into a pregnancy with a 98.6% accuracy.

The test has a false negative rate, saying a child has Downs' when they do not, of 0.2%. This seems small, and it is, but it means that it is wrong once every 500 times tested.

The rate of Downs' is 1 in every 691 live births.

Would you have the test? Would you want your wife to have it? I have a definite thought on this, just curious what you think.


cube said...

This is a tough one for me. My aunt was in a car accident while she was pregnant with my cousin. In those days there were no tests to determine damage and he was born retarded, but not so retarded that he didn't know what he missed in life.

He never married, he never drove a car, he never went to college, never had children etc.,. He was a grown man who never had a life and it left him depresed and eventually violent.

He would hurt himself, scratch his face, pound his head on the wall.

It got so bad that my aunt was afraid to go to sleep fearing that he might hurt her.

He is currently in an institution because my aunt is too old and frail to care for him anymore.

I would have a hard time bringing such a child into the world.

Brooke said...

I declined it when I was pregnant because I knew I would never have a 'theraputic abortion.'

In hindsight I might choose to now just to be prepared for the extra needs of a DS child.

sue hanes said...

Chuck - We are getting into a weird area here.

My first thought is that Downs Syndrome children have brought much joy into many lives.

Chuck said...

When my wife was pregnant with our first kid (we have 3) she was asked about testing. We declined because we were pro-life and felt that we would not do anything about the results anyways so why go through it.

I think that having children is a crap shoot.

Yes, having a Downs child would be hard.

There are a lot of things that children can have that are hard to deal with and can even require institutionalization.

I worked in a group home while I was in nursing school. We had 4 men in the home, none of them had Downs and they were all severely developmentally disabled.

We had severe schizophrenia, autism, and I forget what else (it was 15 years ago).

I guess the point is, do we test for these too?

I do not want this to be read as a rebuke to anyone, I genuinely wanted to know what people's thoughts are. Further, I admit it is a tough choice. For my wife and I, it was not. We decided we would deal with what came.

My concern with this test is that it is venturing into eugenics. Is it eugenics? No, I don't think so but it is starting us on the road to it.

Technology will eventually be such that we will test for a lot of diseases, likely all of the genetic ones eventually.

Where is the line?

I always fear the slippery slope. There are those among us in society that would gladly use this to make "perfect" humans. This makes it easier for the next test.

Chuck said...

Cube, I understand the issue. I have known families who have had to deal with children that are hard to handle. The decision to place them in a home can be devastating. I still can't go with the test.

I do wonder though if a more appropriate test to develop would be one to give a couple info on their likelihood of having a Downs child (or other genetic disorder). That would then give them the ability to decide not to have a child and adopt instead.

Brooke, you do make a good point. Using the test as knowledge and preparation would be helpful.

Sue, agreed. This family seems genuinely happy with their decision. They have also brought heart-ache and turmoil. What do we do about it?

You are dead on though - it is a weird area.

Z said...

Is it eugenics?
I think so.
Is there deep sadness and difficulty when children are born 'imperfect?'
Heck yes.

Chuck said...

Z, it is sad that children have to be born this way. They are all children, regardless of disability and deserve life.