The end of Down syndrome

[YankeeFan]

It may be an advancement, but it still saddens me.

A new, simple way to detect Down syndrome in a fetus means the condition will be virtually extinct -- but not without a great deal of controversy, experts say.

Last month, San Diego-based Sequenom released a test that allows doctors to screen for the most prevalent type of Down syndrome with only a blood test from the mother. The screening is available in 20 cities and is expected to hit New York soon. Two other companies have plans to release similar tests next year.

“What you end up having is a world without people with Down syndrome,” says Paul Root Wolpe, director of the center for ethics at Emory University. “And the question becomes is that a good thing or bad thing?”

Because the current methods of screening for Down syndrome, amniocentesis and chorionic villus sampling, carry a risk of inducing miscarriage, only about 2% of pregnant women in the nation undergo the screening, says Dr. Brian Skotko, of the Down syndrome program at Children’s Hospital Boston.

The safer prenatal screenings will likely mean more women will be tested, and the number of women carrying babies with Down syndrome who terminate their pregnancies could increase, if not skyrocket. Today, 92% of mothers who get a definitive diagnosis of Down choose to abort, surveys show.

“It’s a real conundrum,” Wolpe says. “Human beings have always tried to fight and cure disease, and this tool, projecting it forward 50 years when it’s powerful enough, will make a difference in eliminating those diseases in the world. It’s a tough call.”

http://www.nypost.com/p/news/opinion/opedcolumnists/the_end_of_down_syndrome_yetA47ZB9s5Rzg0Fjbb5QM#ixzz1dbCCFfp0

 

[Dick Whitman]

It won't mean the end of Down Syndrome.

The statistic is that 92 percent of women who find out their baby has Down choose to abort. But that doesn't account for the 98 percent women who choose not to find out. The article breezily attributes that to the risk of miscarriage in the screening procedure. In our own situation, I do not even recall that risk coming up when we decided not to screen. We chose not to screen because we were having the baby no matter what. There was no reason to screen, because we were not going to abort regardless.

 

[YankeeFan]

It won't mean the end of Down Syndrome.

The statistic is that 92 percent of women who find out their baby has Down choose to abort. But that doesn't account for the 98 percent women who choose not to find out.

The idea is that many more women -- younger women, at less risk -- will get tested because this test is so non-invasive and easy. And safe.

 

[Dick Whitman]

It won't mean the end of Down Syndrome.

The statistic is that 92 percent of women who find out their baby has Down choose to abort. But that doesn't account for the 98 percent women who choose not to find out.

The idea is that many more women -- younger women, at less risk -- will get tested because this test is so non-invasive and easy. And safe.

I understand that that's the idea. But I still don't think that 100 percent of women who are having a Down Syndrome baby will choose to abort it. Maybe you cut the condition in half or something like that. But to say that this is the end of Down Syndrome, considering this nation's split feelings on abortion, is highly unlikely.

 

[YankeeFan]

It won't mean the end of Down Syndrome.

The statistic is that 92 percent of women who find out their baby has Down choose to abort. But that doesn't account for the 98 percent women who choose not to find out.

The idea is that many more women -- younger women, at less risk -- will get tested because this test is so non-invasive and easy. And safe.

I understand that that's the idea. But I still don't think that 100 percent of women who are having a Down Syndrome baby will choose to abort it. Maybe you cut the condition in half or something like that. But to say that this is the end of Down Syndrome, considering this nation's split feelings on abortion, is highly unlikely.

I'd guess the number choosing to terminate would remain around 92%. Why wouldn't it?

If that's the case, with many more women getting tested, the number will drop by much more than half.

 

[Dick Whitman]

It won't mean the end of Down Syndrome.

The statistic is that 92 percent of women who find out their baby has Down choose to abort. But that doesn't account for the 98 percent women who choose not to find out.

The idea is that many more women -- younger women, at less risk -- will get tested because this test is so non-invasive and easy. And safe.

I understand that that's the idea. But I still don't think that 100 percent of women who are having a Down Syndrome baby will choose to abort it. Maybe you cut the condition in half or something like that. But to say that this is the end of Down Syndrome, considering this nation's split feelings on abortion, is highly unlikely.

I'd guess the number choosing to terminate would remain around 92%. Why wouldn't it?

Because right now you have a self-selecting group choosing to: (1) Get tested; (2) Terminate.

The people choosing to get screened right now are choosing to get screened because they plan to terminate if the baby has Down. There was no upside to us getting tested. There are, apparently, risks that I didn't know about but maybe my wife did. Plus, it didn't matter to us. We were having the baby anyway. So no need to get screened.

Only about 50 percent of the people in this country even believe that abortion should be legal. What percentage of them would actually undergo one? Not all of them.

This isn't the end of Down Syndrome. Not by a long shot. Not unless it is accompanied by the end of the pro-life movement.

 

[Lugnuts]

The people choosing to get screened right now are choosing to get screened because they plan to terminate if the baby has Down.

Not always true. Some couples get screened because they want to be prepared. I personally know of two cases where the couple chose to screen, got a positive and had the babies.

 

[RickStain]

The people choosing to get screened right now are choosing to get screened because they plan to terminate if the baby has Down.

Not always true. Some couples get screened because they want to be prepared. I personally know of two cases where the couple chose to screen, got a positive and had the babies.

It's definitely not always true, but it's a useful enough guide to guess that the 92% statistic won't carry over.

 

[Dick Whitman]

The people choosing to get screened right now are choosing to get screened because they plan to terminate if the baby has Down.

Not always true. Some couples get screened because they want to be prepared. I personally know of two cases where the couple chose to screen, got a positive and had the babies.

You're right.

That's the 8 percent.

 

[YankeeFan]

The people choosing to get screened right now are choosing to get screened because they plan to terminate if the baby has Down.

Not always true. Some couples get screened because they want to be prepared. I personally know of two cases where the couple chose to screen, got a positive and had the babies.

Very brave, very strong people.

If you don't mind my asking, how are the families doing?

It's not easy, but in my experience (as an observer, not a parent), it brings its own, very special rewards.

 

[black dude with pompano]

No one is more committed than me (and my family) to ensuring people with intellectual and developmental disabilities live a rich, full life and are treated with dignity and respect. I could go into the back story with my family, but it would take too long.

But I've also seen the sadness of watching a loved one with IDD grow up knowing they will never reach their full potential and will always be dependent, in some ways, on others. I've seen the strain it puts on a family financially and emotionally.

No one should look past the complicated decisions involved in abortion and I would never judge anyone who decides to bring the pregnancy to term even knowing the child had Down syndrome. But I can also understand why the vast majority would choose to end the pregnancy. In our case I know it would have been the right decision both for our family and for the potential human who is doomed to a life in which he will grow into an adult but be trapped with the mind of a child.

So, long story short, if Down syndrome is in fact eliminated in 50 years, it would be something I view with happiness, not sadness.

 

[YankeeFan]

The people choosing to get screened right now are choosing to get screened because they plan to terminate if the baby has Down.

Not always true. Some couples get screened because they want to be prepared. I personally know of two cases where the couple chose to screen, got a positive and had the babies.

It's definitely not always true, but it's a useful enough guide to guess that the 92% statistic won't carry over.

I'm not sure it's going to drop much.

The woman who are tested now are tested because they are older and at higher risk.

 

[Dick Whitman]

The people choosing to get screened right now are choosing to get screened because they plan to terminate if the baby has Down.

Not always true. Some couples get screened because they want to be prepared. I personally know of two cases where the couple chose to screen, got a positive and had the babies.

It's definitely not always true, but it's a useful enough guide to guess that the 92% statistic won't carry over.

I'm not sure it's going to drop much.

Then should we be highly skeptical about the sincerity of the pro-life movement?

 

[SF_Express]

We had a scare with this with my youngest, but the final test was fine, and he's now 23.

I can't say definitively what would have happened if the test had come back the other way. I'm pro-choice, and my ex-wife certainly is, but when it's your own child, it obviously becomes a less abstract moral/political issue in a hurry.

 

[YankeeFan]

The people choosing to get screened right now are choosing to get screened because they plan to terminate if the baby has Down.

Not always true. Some couples get screened because they want to be prepared. I personally know of two cases where the couple chose to screen, got a positive and had the babies.

It's definitely not always true, but it's a useful enough guide to guess that the 92% statistic won't carry over.

I'm not sure it's going to drop much.

Then should we be highly skeptical about the sincerity of the pro-life movement?

When people are faced with these kinds of personal, private decisions, yes.

Look, Sarah Palin (not to throw this off the rails) admitted to considering an abortion when she learned of her son's diagnosis.

My brother and his wife -- who have all healthy kids -- never go the test, because abortion wasn't an option for them.

But, let's be honest, not getting the test also spares you from having to consider it too.

 

[Dick Whitman]

The people choosing to get screened right now are choosing to get screened because they plan to terminate if the baby has Down.

Not always true. Some couples get screened because they want to be prepared. I personally know of two cases where the couple chose to screen, got a positive and had the babies.

It's definitely not always true, but it's a useful enough guide to guess that the 92% statistic won't carry over.

I'm not sure it's going to drop much.

Then should we be highly skeptical about the sincerity of the pro-life movement?

When people are faced with these kinds of personal, private decisions, yes.

Look, Sarah Palin (not to throw this off the rails) admitted to considering an abortion when she learned of her son's diagnosis.

My brother and his wife -- who have all healthy kids -- never go the test, because abortion wasn't an option for them.

But, let's be honest, not getting the test also spares you from having to consider it too.

So it's kind of like the, "What if your own family got murdered?" death penalty question.

 

[YankeeFan]

So it's kind of like the, "What if your own family got murdered?" death penalty question.

Yep.

 

[Lugnuts]

YF, I'm not really sure how they're doing, to be honest.

But on the testing, not only are the blood tests getting better but so are the more invasive tests like CVS and amnio. And CVS and amnio can look at all the chromosomes, screening a whole host of diseases, not just Down.

 

[Care Bear]

I'm in my early 30's, so my husband and I chose not to test for Down when we found out we were pregnant (almost a year ago!). The test (as previously mentioned) is risky and expensive. However, I recall the doctor asking us if this is a test we were interested in undergoing. I looked at my husband, he looked back at me, and we had no clue how to answer. The doctor said, "Let me put it this way, would you choose to terminate the pregnancy if the baby tested positive?" I think we both replied "No" at the same time.

Looking back, I think I would respond the same. Although, having a baby with just a little colic is emotionally consuming. I can't imagine struggling with something like Down Syndrome every day for the rest of our lives. Heartbreaking.

 

[LongTimeListener]

The odds go down, by a staggering degree, once you cross the barrier of age 40. I knew there was an increase, but I had no idea just how pronounced that increase was, and how specific it is to the age rather than to a general age range. Incidents of Down Syndrome by age of mother:

34: 1 in 500
35: 1 in 385
36: 1 in 294
37: 1 in 227
38: 1 in 175
39: 1 in 137
40: 1 in 106
41: 1 in 82
42: 1 in 64
43: 1 in 50

The risk of any chrosomal deformity follows a similar path, from 1 in 238 at age 34 to 1 in 33 at age 43.

So the evaluations made by people in their 20s, or even into their mid-to-late 30s, are quite different from those made by older couples. An amnio for a younger couple doesn't make sense if only because the risk of triggering labor is mathematically greater than what you're going to find anyway.