Comments on: Mandatory Autism Registry in NJ Proposed

By: Autism Vox 2008 in Review: August-December

Autism Vox 2008 in Review: August-December — Thu, 01 Jan 2009 09:06:43 +0000

[...] (”strange play“), and more speculation about autism and schizophrenia as the same. A mandatory autism registry was proposed in New Jersey; researchers began to look for autism’s causes at home; and I [...]

By: Navi

Navi — Mon, 01 Dec 2008 03:12:33 +0000

I know of a MI family that moved there…

The birth defects mand database bugs me too. IMO if it was voluntary I’d be all signing up. And voluntary things that work don’t get made mandatory.

By: ASDmomNC

ASDmomNC — Wed, 19 Nov 2008 12:53:42 +0000

Kristina, if it were optional, it wouldn’t squick me out as much. However, like Mrs. C. said, how long before voluntary becomes mandatory?

As for NJ having the highest autism rates, I thought that was mostly due to the fact that NJ is known for having awesome autism services, therefore people with autistic kids MOVE there, thus increasing the numbers. Is that not correct?

By: C. S. Wyatt

C. S. Wyatt — Wed, 19 Nov 2008 03:20:07 +0000

Minnesota also has “opt-out” genetic screening for 50+ conditions. Almost no one seems to understand the opt-out, which does bother me. I have colleagues who think no religious or personal reason justifies an opt-out from this screening, as there is no mandatory treatment for any condition.

Reporting diagnoses is one thing… prescreening quite another. Every other Western nation has a national health database, particularly those with centralized health care systems. Think about it: nationalized health care means, by definition, a national, centralized data repository.

Or did everyone thing national health care didn’t involve epidemiology, risk assessment, etc? Once everyone is part of one system, that system has to control costs (and health) somehow. Data analysis is a major part of predicting and controlling national costs.

The Minnesota model bothers me because we are now considering testing with the “opt-out” simply meaning we won’t tell the parents if we discover something. Nice.

“Newborn screening is an important, even life-saving, part of infant health care. Minnesota Statutes §144.125 Subd. 3 and §144.966 Subd. 3 provide several options to Minnesota parents and guardians regarding newborn
screening.”

You have to love these instructions…

Documenting a directive to destroy newborn screening specimen and/or test results

_____1. Have the parent read and sign the Directive to Destroy Newborn Screening Test Results and/or Blood Sample form. Have a birthing facility witness or a notary public sign the form (to authenticate
parental identity).

_____2. Insert the original document in the child’s medical record.

_____3. Provide copies to the parent, the child’s physician, and the Minnesota Department of Health Newborn Screening Program at the address below.

Guess how many parents opt-out???

By: Emily

Emily — Wed, 19 Nov 2008 02:34:02 +0000

Sweden and some other countries maintain very detailed registries of health information, and thanks to those registries, we’ve gotten some incredibly good epidemiological information.

I looked over that list of reportable “defects,” and given our laundry list of urological problems and various other things, we’d also be on the hit list from that. One thing that’s got me confused is why “neonatal acne” was EVER on that list? What’s up with that?

By: FXSmom

FXSmom — Wed, 19 Nov 2008 02:29:32 +0000

Anytime anyone is told they have to give up information it frightens me

By: Regan

Regan — Wed, 19 Nov 2008 02:12:46 +0000

un-American places

Like Ory-gun? Are we allowed to discharge firearms in tie-dye?

Whether we like this regulation proposal or not, I still notice that we have freedom of speech.

Happy Ammo Day justthisguy.

By: Justthisguy

Justthisguy — Wed, 19 Nov 2008 01:57:09 +0000

Those of you who don’t like this, and nonetheless voted for Obama? I just snicker and laugh at y’all. Sow the wind, reap the whirlwind.

Republicans may be individually venally criminal, but the Democrats, these days, seem to be a co-ordinated actively evil effort to destroy Western Civilization, the last best hope of humanity.

Oh, BTW, November 19 is National Ammo Day!

Everyone buy at least a hundred rounds!

(unless you live in New Jersey, or Kalifornia, or Illi-noise or Massa-chews-it, or similar un-American places

By: Mrs. C

Mrs. C — Wed, 19 Nov 2008 01:43:32 +0000

Suddenly, if I moved to New Jersey, I’d say my children aren’t even on the spectrum! They’re just quirky! Or “cured”! Or something!

But those lists are just plain ol’ scary. Checked out the Delaware link. It’s mandatory reporting there, but for really touchy-feely-nice reasons.

Ugh.

By: Niksmom

Niksmom — Wed, 19 Nov 2008 01:31:34 +0000

Delaware has a registry which went into effect in 2006. Here’s a link to the Autism Society’s page which talks about it and why they pushed for it.

http://www.delautism.org/autism_registry.htm