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

quick thoughts....

[mizzlaurajean.livejournal.com]

I think all forms of genetic testing will gradually increase and many more disabilities and birth defects will drop accordingly.

With medical technology moving forward testing will become more sophisticated and less expensive for all disabilities and diseases.

I think if the technology is available to provide testing that it is unethical not to offer it to all pregnant women.

While it's understandable to worry that those with diabilities will have fewer people like them they can relate to and that funding for their needs would then be less that just isn't cause to not move towards giving people knowledge and letting them make informed decisions.

I think the benefits of knowing what you are siging up for out weigh the consequences. IMPO.

[starcat-jewel.livejournal.com]

Some of the issues and concerns here are eerily reminiscent of childfree-related issues. For example, you have the parents of Downs children saying that if couples "really knew" what it's like to raise a Downs child, they would be less likely to end their pregnancies. Reminds me of all the times I've been told that I would just have to take that leap of faith and have a child before I could understand what a wonderful thing it is. And maybe that's true, and maybe it would have happened... and maybe not. How ethical would it have been for me to gamble a child's future on that chance?

I'm with the above poster. If the testing is readily available and safe, it's obscene not to offer it to everyone. There will always be those who will choose not to take it, and there will always be those who will choose not to end the pregnancy even if the result is positive. But that's their right... as it is also the right of those who don't feel capable of taking up that calling to call a halt and try again.

[lollardfish.livejournal.com]

I'm not sure the issues are fully parallel, though I understand where you're coming from.

One part of the problem with Down Syndrome is that parents were routinely misinformed (largely because the doctors were also misinformed), and are still sometimes misinformed, about the range of potential for raising a child with Down Syndrome. We weren't, but we had our baby at the best birthing center in Minnesota, possibly this whole section of the midwest. I'm pretty sure that if we were told our child was going to never recognize us, have no joy in its life, and be so retarded that it would never be able to feed itself, clean itself, or feel any emotions (these are things parents were routinely told as late as the late 70s), termination would start to make sense. It's just not true.

[starcat-jewel.livejournal.com]

Oh, I wasn't trying to claim that they were exact parallels; I just caught some spooky echoes. And yes, accurate information is just as important as the test itself; people can't be expected to make an informed decision if they're MISinformed! *suppresses rant about "abstinence-only" sex ed disinformation campaigns*

[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.

[zinzinzinnia.livejournal.com]

My first reaction to some of the rationales listed in the article (and I haven't had a lot of time to ponder it fully) is that the argument that medical research allocations will decrease is a bit circular and perhaps specious -- although some of that research would go to things like improved heart-correction procedures, etc, wouldn't some of that research also go towards "correcting" other aspects of Down's, including, presumably, finding and "correcting" the genetic source of the condition? I recognize that some of the medical issues faced by children with Down's don't outweigh the other aspects that determine quality of life, but pointing out that these medical issues are important enough to warrant research is, in my mind, tantamount to pointing out how costly (not only in terms of money but in terms of emotional toll) those medical issues are.

My brain is a bit fried, and I'm the middle of a meeting, so I hope that makes some semblance of sense.