From the mailbox.

Friend and commenter Christy pointed me to this piece by William Saletan at Slate.com regarding prenatal genetic testing, itself a response to articles in the WSJ (more anecdotal, the story of one family, and boy is it ripe for discussion about family dynamics) and the WaPo (more general discussion of pros and cons).

Saletan:

It's pretty rich to see pro-lifers wring their hands about this information while, at the same time, they campaign for ultrasound laws. As Emily Bazelon has pointed out, you can't be for information when it discourages abortions but against information when it leads to abortions—not if your real purpose is, as pro-lifers insist, simply to inform women. And my libertarian hackles go up when paternalists fret that genetic tests might cause undue "anxiety" in "emotionally vulnerable" couples. If you're going to let people raise their own kids, you'd better trust them to think for themselves.

Saletan's pretty flip here about the nature of the criticism, which includes  advocates for the disabled, bioethicists, and academics who are reasonably concerned about the rates of false positives/false negatives.  As for the anti-information thing, I rather expected that to be a strawman, but he writers of the WaPo article did find  a pro-life advocate whom they quoted as being against information if that information happens to lead to abortion.   I suppose it wasn't very hard.  Sloppy thinking is everywhere.

Accurate information is never a bad thing, though people act in all different ways in response to information.  So few ask, though, what is the cost of this information, and how accurate is the information?  And what's the cost of going without the information?  If the rate of false positives is quite high, are we only paying for mental distress?  And how will the insurance industry behave with the info?  Tough call.  

Eugenics is nasty stuff.  And, of course, if you take my position, the unborn are already people and not just genetic material, and so destroying them goes beyond eugenics; instead, it's in round-up-the-defectives-and-put-them-out-of-our-their-misery territory.  

(I understand, philosophically speaking, how so many can hold a position that the unborn are not people.  It's not like that kind of "us people"-vs.-"them other beings"  mentality has never happened before in human history.  We've got lots of experience with it, even in the modern age (It's scientific!) It does blow my mind sometimes, and has especially during my pregnancies, how so many take it for granted that the "we're all people" position is reserved for nutcases.  I mean, really -- is it that crazy to conclude that the unborn are people?  Or is it, as I suspect, just dangerous to take that proposition to its logical consequences?)

(Science will never tell us who ought to be treated as a person.  It didn't tell us in prehistory, it didn't tell us in 1492, it didn't tell us in 1864, and it doesn't tell us now.)

As I wrote back to Christy, 

There are other parallels.  It reminds me a little of the genetic tests
for the BRCA gene, and women choosing, based on positive results, to
undergo prophylactic mastectomies before any sign of cancer.  Expensive,
disfiguring, major, possibly unnecessary surgery, and I don't know if it
is covered by insurance or not typically.  What if the ratio of
(positive BRCA test)/(actual cancer cases in people with positive BRCA
test) was quite high?  Would we have a reasonable discussion about
whether it was worth the anxiety and the cost in unnecessary surgeries
even to know the difference?

She replied to point out the possibility of testing being "pushed as 'routine' and expected" even when the patient cannot or will not act on the resulting information.  Of course, even when a patient cannot or will not act on the information, other interested parties -- like health insurers -- might.  

I don't know about the rest of my readers, but our employer-provided health coverage begins covering new babies when they're born.  How about individual plans?  What happens when that unborn baby -- not YET covered -- is known to have a condition before birth?

Anyway, the biggest problem with the information produced by genetic testing is that it appears to be -- like so many kinds of medical information -- an incomplete predictor of the future.  This wouldn't be so bad except that people, including many who should know better, will react to its predictions as if they were accurate and complete.  We wish there were a crystal ball; it's human nature, no?   

That there exists a recourse which appears to make problems in this crystal ball Just Go Away is a separate problem.  Human nature again.

Comments

[Cathie B]

When my 5th was in-utero, I got the "Level II" ultrasound because of my "advanced maternal age". We call it the "let's find out the gender" ultrasound. They found 4 markers for Downs. We were really pushed for further testing and they insisted we meet and talk further with a genetic counselor. We informed them we would not terminate under any condition, even if my life was at stake and they shook their heads. The counselor asked, "Do you know how difficult it is to raise a special needs child?" I said I did (my first would be clinically diagnosed "special needs".) All kids have their challenges and I would take a special needs one in a heart beat if that is what God chose to give us (but I digress)... They asked us to come back in 3 weeks, we did. All markers were gone.

The point is, in scheduling my US, they insisted on going by LMP due date rather than my known NFP date which was 1 1/2 weeks later. They slipped me in at 18 weeks LMP. So, the baby was 16 1/2 weeks. All the fuss was because many of the markers exist in younger fetuses. They go away as they develop. What a bunch of noise and fuss they made. We did do a lot of praying in those 3 weeks. Not that the baby didn't have Downs, but for the people who counseled us and pushed us to have more tests and possibly abort. We also prayed for the strength we would need if he did have special needs.

Good post..