February 21, 2005

Debate Precedes Report on Nationwide Newborn Testing Policy

A federal advisory group is preparing to release a report that calls for nationwide standardized newborn testing for 29 extremely rare but potentially devastating diseases and conditions. Currentyl each state has its own set of tests that newborns automatically receive, which cover from 4 to 35 different diseases.

The problem, well, there are two, no, three potential problems:
1) History shows the risks of automatically administered but untested treatments that caused widerspread harm than the original condition.
2) False positives for little-understood diseases can trigger aggressive-yet-useless treatments.
3) On the other hand, the advocate parents and families of kids whose otherwise treatable condition went undiagnosed until it was too late make emotionally powerful and persuasive arguments for every test possible.

Panel to Advise Testing Babies for 29 Diseases [NYT]


It seems to me we do this here in Quebec, to a limited degree. I'll have to ask my wife (I'm just starting to remember our postal code after 4 years of living here). But we had to do this thing where we put a little absorbent strip into our son's diaper where he would pee on it and then take it out, let it dry and send it off in a special envelope (it would have to be special yes?) and they did some tests on it.

My google skillz in French are still kind of crap so I'm having a hard time coming up with search strings, but I'll find a document later today, probably after the second espresso.

I, for one, applaud the tests. Many parents are nervous and apprehensive about the health of their baby when born. The tests can give some peace of mind (assuming there aren't many false-negatives). These types of tests can always be followed up to ensure that the original positive result was correct. As you said, if you can diagnose these problems early and save some heartbreak, that's always a good thing.

I guess I'd have to know more about how they are implemented and such.. and the rate of false positives, but overall I'd say it's a good thing. Just the testing, at least.

Hi Greg!

In honor of Parent Appreciation Day at 'Been There' you are a thoughtful, interested, funny, talented person and dad and I really love your blog.

Just a couple of issue with your potential problems:

1. The first is a problem, not with the screening, but with the treatment.

2. If parents received a positive test for a certain disease, their first reaction would not be to start an agressive treatment, instead they would likely take another test to confirm the first test, thereby reducing the likelihood of false positives.

3. Advocates the additional screening of newborns so I don't see why it's listed as a problem.

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