In medicine, a guideline published by a specialty association is more than a "suggestion." If a doctor varies from that guideline, he or she is presumed guilty of varying from the standard of care. And had better find a defense lawyer, because there's a good chance she'll be sued for malpractice or, in the case of the new American College of Obstetricians and Gynecologists (ACOG) guidelines, for "wrongful life."
The consequences of routine general screening of women for Down's syndrome will mean that more women will be faced with more false positives. More doctors will be placed in the position of having to inform a woman of her "choice" to abort her baby. Many will stop doing OB. The cost of medical care and obstetric care in particular will go up in the US.
And an entire group of children will disappear.
What will be the target of the next "screening" guidelines? The "gay" gene? Asberger's?> Cystic Fibrosis?
How about Sickle Cell disease, or just the trait?
How about the many genetic abnormalities that show up, but which are not yet associated with any specific disease?
And where will all of the genetic counselors come from? And who will pay for their services?
What else are we wiping out that we don't know about, by removing these children from the gene pool?
For more on the subject, read Patricia A Bauer's editorial in the New York Times, and Nigel Cameron's comments. Or read Dr. Shari DeSilva's note from last year and my comments on this blog.
Sunday, January 14, 2007
Universal screening of pregnancies - guidelines
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3 comments:
I dont think false positives are really an issue. The ultrasound test has a 5% false positive rate, but all positives are checked with an amniocentesis sample and a simple count of the fetal cells recovered - a false positive rate of almost zero. The chances of both tests, which work by completly different means, showing a false positive... negligable. The worst women will face will be a time of uncertinty between the two tests when they know they have a 95% chance of a down's fetus, but are waiting final confirmation.
Noone is being removed from the gene pool. They dont breed.
As for the slippery-slope arguement, I suggest handling it in the way such slopes are usually approached - debate every stage independantly, at the appropriate time. The debate at this time is at the top of the slope - Down's syndrome. It seems the decision has been made to provide screening and the option of abortion by weighing up the consequences of each position. When the next test becomes available with a low enough cost and high enough reliability to be used routinely, that can be debated in the same way, seperately. The further down the slope, the harder it is to justify as symptoms become less severe.
Down's syndrome has a wide range of expression - not all have severe effects.
False positives are deadly - even if there are confirmatory tests with a higher confidence level, the increased numbers of tests will inevitably lead to more actual deaths. I've delivered babies that were different sexes than the UltraSound predicted.
In the UK, as opposed to the US, there are much stricter rules for who can and can't obtain an abortion. In the US, there are no regulations in practical terms, other than in the informed consent process. There really is no "slippery slope." If the tests are offered, the abortions will result. And each approved step justifies the next step.
One thing that separates the US from countries such as India, (where illegal sex-selection by abortion is wide-spread enough to result in 130-150 boys born for each 100 girls born) is our professionals' respect for regulations, although it's probably motivated by fear of litigation more than true values.
Regardless of your perception of the worthiness of Downs Syndrome children and adults, even 0.5% false positives will result in quite a few "unnecessary" deaths. And much more medical costs and strain on medical resources.
BTW, of course they "breed." While males with trisomy 21 are infertile, only half of the conceptions of a mother with Downs syndrome will inherit the trisomy.
Bah, my very nice post seems to have vanished somehow, and I cant remember what I wrote now.
Something about breeding being very rare, I think... a comment about it being irrelivent anyway. But most of the post was a long rant on why the UK has a good framework for regulation abortion, but nothing like it can exist in the US at this time because the issue has become too polarised and everyone who has a strong view has migrated to one extreme or the other.
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