Complicated Questions

[lollardfish]

NY Times on Testing for Down Syndrome and it's consequences.

An interesting article and a subject I plan to write about down the road. This issue of how you break the news is pretty critical. Once, as Michael Berube wrote in his book, parents were told they had, or were going to have, a "mongoloid idiot" who would never recognize their parents, have an IQ of 20 or so, and would probably die by age 5. We've come a long way.

George Will wants to stop the test because, in his conservative reactionay mode, he wants to deny people information. He doesn't trust people.

I think, in my rosy liberal way, that people need to be educated and then allowed to make whatever choice they think is best, and that how we educate people is critical.

I do think the premise that programs for people with Down Syndrome will vanish if this test is made routine for women under 35 is flawed. Yes, rate of increase may slow, but the population won't vanish and hundreds of babies, at least (instead of the 5500) will still be born with the condition every year.

Anyway, it's complex. I look forward to seeing your comments.

Comments

[creidylad.livejournal.com]

During my first pregnancy, I did the AFP blood-testing route and came back with an extremely elevated risk of Downs or other related genetic disorder. We went ahead and scheduled an amnio, but it was half of August waiting for the test and the other half waiting for the result.

It was a long, horrible month of uncertainty.

Trying to decide whether or not to schedule the test at all and what to do with the results was almost as harrowing as waiting for the results themselves. We had decided that no, we would not terminate. If they could tell us through the screening that we were looking at less than a year to live for our baby we might have felt differently, but the screening could not tell us that. If we'd still be in our first trimester we might have felt differently -- but again, we didn't have to make that decision and didn't. But, we reasoned, either way, it was better to Know.

And it was. Whatever the answer would have been, it was better to Know. It meant either losing this cloud looming over our heads of fear and worry for our baby or else being prepared, dealing with the emotionsof changing expectations early, and a birth unclouded by sudden and emotionally confusing news.

I looked at it this way: my child was going to have to climb many, many mountains in her lifetime. So by Knowing, I'd just know the name and rough but only very approximate shape of one of those mountains ahead of time. Then of course in the end, our baby's time in the hospital ended up an emotional rollercoaster and daily challenge anyway... different mountain, same idea. No test. The intervention came later than it should have because we didn't Know.

So yes, I agree with you. Always trust people. And besides which, the test is never going to be eliminated in practical terms. And it may well become recommended for younger women as amnios become safer and safer -- we'll see, I guess.

My bigger fear is that this 'selective pregnancy' stuff will make it increasingly tempting for the right wing to try to knock out abortion rights, but with any luck they are about to lose national power anyway.

To share another story: I used to work with a family who had a single child with genetic dysautonomia and wanted a second child. Neither the parents nor their daughter felt equipped to deal with a second child with the same disability, though, and they didn't want to roll the dice on a one in four chance. So, they held on a decade and finally a reliable genetic test was developed, so they rolled the dice, got pregnant, got tested, came up perfect.... and miscarried anyway. Then again, and had a a healthy baby. Without the test they'd have never tried, but again, in the first case, the test, like all such things, was not a predictor of a healthy pregnancy and child; it simply eliminated a single shape of the first mountain.

[lollardfish.livejournal.com]

I think the test isn't the amnio, but the "quad" screening or something. We missed it by not knowing Shannon was pregnant early enough. I'm not sure if she would have had it since it isn't routine yet.

Thanks for sharing this. I didn't know.

[creidylad.livejournal.com]

Yeah, I missed quad screening both times out, but it's sort of six of one half a dozen of the other. They tell you amnios have increased risk of miscarriage, but that's not true at hospitals where there is top equipment and training.