Running Babies Through a Scanner Darkly

From today's Congress Daily:

Former Buffalo Bills quarterback Jim Kelly is scheduled to make a pitch on Capitol Hill today for legislation on the House floor requiring all states to screen newborns for the full complement of disorders that can be detected in early childhood.

Kelly, whose 8-year-old son died in 2005 of a nervous system disorder called Krabbe disease, planned to join Sen. Christopher Dodd, D-Conn., chairman of the Senate Health, Education, Labor and Pensions Children and Families Subcommittee, to urge the House to pass Dodd's newborn-screening bill. A vote on the legislation is scheduled for today.

Not all states screen infants for all disorders such as Krabbe, and Dodd's bill would require such testing to be uniform across the country.

While it's easy to imagine (and to celebrate) a world where genetic testing is so cheap and easy that most people get their kids tested as a matter of course, mandating testing at this stage doesn't make sense and may even slow progress and artificially inflate prices.

The same reasoning applies here as in the case of mandating florescent light bulbs: A mandate will reduce incentives to keep pushing prices down and testing technology at the bleeding edge of science. Plus, picking a list of disorders to be tested for, and setting it down in the fast-drying concrete of legislation will breed a less flexible, less adaptable field.

How's this for a case of nanny state--literal and figurative? 

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  • SIV||

    Never too early to start them on antidepressants, ritalin and bipolar meds.Better to catch those medical diseases early.

  • Kolohe||

    Unless we going to start trading infants on the NASDAQ, I completely fail to see the commerce clause justification in this legislation.

  • ||

    Plus, picking a list of disorders to be tested for, and setting it down in the fast-drying concrete of legislation will breed a less flexible, less adaptable field.

    Lots of states already have mandatory testing of newborns. What happens is, the list gets locked in.

    Providers order only the mandatory tests,
    labs provide only the mandatory tests (without exorbitant fees for extra tests), and payers pay for only the mandatory tests. As new tests come along, they are frozen out of the set-in-stone mandatory list and concurrent medical practice.

  • Paul||

    The same reasoning applies here as in the case of mandating florescent light bulbs:



    Which are full of all kinds of environmental toxins that good old-fashioned light bulbs aren't. Can't wait for that fight to begin in five years...

    I completely fail to see the commerce clause justification in this legislation.

    Kolohe:

    Welcome to the confusion everyone else in the logic-based community suffers.

  • Paul||

    But RC, someone who suffered a tragedy testified before congress. Something has to be done.

  • ||

    Can you prove that it would harm the baby? If not then we should force it on all of them in the name of science. What the heck, lets give them a chip implant too. We might need John Elway to get this passed.

  • ||

    I say we kill two birds with one stone and mandate fluorescent babies. I don't know if they'll be disease free, but they'll be less likely to get lost or get hit by a car.

    On a side note, is "florescent" an acceptable alternate spelling? I know "fluorescent" is correct, but both this post and the linked-to post spell it sans u, and my Firefox spell checker isn't recognizing "florescent" as a misspelled word.

  • ||

    Bills' QB is a politician? Second one, following Jack Kemp. This must be some kind of record.

  • ||

    ClubMedSux, I believe that florescence refers to the blooming of flowers.

  • ||

    New business plan: A commercial exchange for the babies that flunk. You can trade them for babies that have the defects you're more comfortable with (or you know how to spell).

  • Neu Mejican||

    The cost-benefit analysis needs to be done for each proposed test.

    Sometimes the harm from the screening will out-weigh the benefit even if it catches every case. Knowledge of who is and is not a case, must also have some forseeable benefit. Knowing about something that has no treatment will not, for the most part, justify the cost of the universal screening.

    Think of doing an amniocentesis on every child to screen for Down's Syndrome.

    You would kill more babies than the number of Down's case you would identify. And once you identify a case of Down's, what then? You can't fix the kids Down's Syndrome.

  • ||

    I find it interesting that he is mandating testing for Krabbe disease. It has no cure according to the NIH website. So, if the kid was tested and came back positive.

    Then what?

  • Michael Ejercito||

    You can't fix the kids Down's Syndrome.


    Why not?

    We know what causes it; the cure is removal of the extra chromosome.

  • Neu Mejican||

    Michael Ejercito,

    Why not?

    We know what causes it; the cure is removal of the extra chromosome.


    And once that easy to administer treatment is in place, you might be able to make a stronger argument for universal down-syndrome screening.

    That treatment is not currently available.

    If it were and if you had to rely on amnio* for your test, however, even fixing every single case would still leave you with an overall negative cost on the society since more children would die (many times over) due to the screening than would be fixed by the treatment.

    *I believe we have better screens these days, but I haven't been keeping up, I must admit.

  • Neu Mejican||

    The case for phenylketonuria is much better.

    Knowledge allows you to avoid a very bad outcome at fairly low cost.

    Universal screening mandates are easily justified.

  • ||

    Mandated testing helps only the insurors who will deny coverage in later years to those found to have expensive disorders.

    The patriot act will make sure such info is distributed to all but the individual involved.

    I have sympathy for Kelly, but this is not a 'solution'. Sometimes nature's course is irrevocable, and as it was not Kelly's job to assuage my nephew's brain cancer, it is not mine to determine and remediate everyone else's kids' assorted fatal anomalies.


    Best

  • Jerry||

    What about screening the unborn? It is quite the burden on society if some mother delivers a child to the world with Down's syndrome. Why should I have to pay for its care, because the mother did not opt for an abortion after a prenatal test? If she's willing to pay for the child's care, fine, but don't ask for society to pay that burden.

  • ||

    I believe that florescence refers to the blooming of flowers.

    Uh oh, I hope Congress didn't make the same mistake. It's already going to be a pain in the ass for me to find compact fluorescent bulbs that will work with my dimmer switches. If I have to find ones that are flowering on top of it, I'm really up the creek...

  • ||

    Then what?

    That's what I was thinking.

    OK, so you mandate the tests...and your infant comes back positive...

    Now what?

    I feel bad for Jim Kelly, but what would the mandatory testing have accomplished? Would it have changed the outcome for his child?

  • ||

    With any luck, he'll be just as good at lobbying Congress as he was at winning Super Bowls.

  • ||

    Mr. Kelly, please go lose another Super Bowl.

    Or at the least, keep your lobbying efforts confined to your own state.

    I'm with Kolohe here; my immediate first thought from this article is "How the hell is that authorized under the Constitution?" Second is "Why must every problem have a national solution?"

  • Taktix®||

    Paired with Socialized Medicine, how long before a fine is in place for one not taking their prescription?

    I've had several psych teachers in college tell me that around 90% of ADD cases are false*, yet these children are prescribed Adderall.

    *Not totally scientific, I suppose, but I'm not a doctor. I could be wrong.

  • ||

    Just wait until insurance companies, employers, schools, government entities and eharmony.com lobby to get a hold of the results for all these tests. Privacy is dying.

  • ||

    Bills' QB is a politician? Second one, following Jack Kemp. This must be some kind of record.

    Doug Flutie was going to speak to a senate subcommittee about steroids, but they didn't have any booster seats for him to sit in, so he opted out.

  • j||

    How's this for a case of nanny state--literal and figurative?

    It seems to be case where some form eugenics is proposed to be enforced by federal law.

  • David||

    Katherine wrote:
    > The same reasoning applies here as
    > in the case of mandating florescent
    > light bulbs: A mandate will reduce
    > incentives to keep pushing prices
    > down and testing technology at the bleeding
    > edge of science.

    Baloney. By this logic, we would all still be driving model-T's. Yet cars have gotten better, cheaper, and safer because that's what the market demanded, and because entrepreneurs found ways to satisfy that demand.

    The same will be true for light bulbs.

  • j||

    David,

    Why do you hate LED's.

  • LevStrauss||

    Am I the only one who feels somewhat safer just because Jim Kelly is pushing the bill? He lost four Super Bowls in a row, maybe he could hire Bob Shrum and see if they can cancel out their losing ways. We need Ron Paul to put on a Dallas Cowboys helmet when they debate this in the HOR. I don't want this to be close.

  • ||

    Am I the only one who feels somewhat safer just because Jim Kelly is pushing the bill? He lost four Super Bowls in a row

    Well, no, you're not the only one...

    Having said that, I have to wonder what is the more amazing accomplishment -- getting to four Super Bowls in a row (after all, no other QB has ever done it), or losing all of them?

  • ||

    You may be able to resist this mandate in the courts--should it pass--if the pregnant woman never crosses state lines. They have similar exemptions for tomatoes.

  • Daniel Reeves||

    So, some dude is reciting a "someone ought to" statement without considering costs? Might as well make a post about the sky being blue and the grass being green.

    Baloney. By this logic, we would all still be driving model-T's. Yet cars have gotten better, cheaper, and safer because that's what the market demanded, and because entrepreneurs found ways to satisfy that demand.

    The same will be true for light bulbs.



    This is circular logic because Model-T's were never mandated in the first place.

    Which are full of all kinds of environmental toxins that good old-fashioned light bulbs aren't. Can't wait for that fight to begin in five years...



    True, but that's diminutive. IMO the real reason that florescent lights should not be mandated is because they don't fade the way Tungsten-Halogen lights do. Theater, photography, and movie production would all be devastated by mandating florescent lights. I know this because I'm a student tech hand at a community college theater and a high school theater. The few florescent lights I have to deal with are extremely annoying.

  • rechoboam||

    We have some mandated testing in Victoria, Australia...heel-prick shortly after birth. Then the blotting paper gets sent off to a semi-public institute forever. If you want the sample back you have to fill out a multiplicity of forms so that The Man doesn't own your kids' DNA forever.

  • Jim Lesczynski||

    Looking at the bill on Thomas, I can't find anything about mandating testing. As far as I can tell, it just provides funding (which the Feds can't afford) for testing.

  • ||

    People who want to mandate a whole raft of tests on newborn seem to assume that these tests come at no cost, which is demonstrably false. Maybe they know that, but assume that they come at no cost to the parents, since it's all covered by insurance. Again, not necessarily true. My wife gave birth to four of our five children at home, with the help of a nurse-midwife. For at least one of those births, the insurance provided by my employer didn't cover such home births, so I had to pay for every test out of pocket. I would not want to pay for another such test, just to help Jim Kelly work through his grief.

  • ||

    Are these tests perfect? Because it seems to me that the false positives and false negatives could create a situation that is far more FEMA'd than it already is without mandatory testing.

  • Invisible Finger||

    The country certainly need Baby Lemon Laws.

  • ed||

    What's the plastic bracelet color for Krabbe disease?

  • ||

    YES, we should have mandatory genetic testing of ALL babies born in the United States... for PATERNITY.

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