Mandatory Autism Registry in NJ Proposed
A mandatory autism registry has been proposed in New Jersey, today’s Press of Atlantic City reports. Health care professionals will be required to report those diagnosed with autism at any time from the day they were born through their 21st birthday. The registry has been proposed as an amendment to the state’s birth defects registry (N.J.A.C. 8:20; more details can be found on the Autism New Jersey website), “although autism is a developmental disorder not a birth defect.” Registration is mandatory, but families can choose to withhold personal information, such as names and addresses:
Under the proposal, health care professionals would not report the personal identifying information of a child diagnosed with autism if the child’s parent, legal guardian or custodian objects to the reporting of this information, or if the individual through age twenty-one who is diagnosed with autism objects to the reporting. Health care professionals would be required to inform the parent, legal guardian, custodian or individual through age twenty-one of the right to refuse to report identifying information. (from Autism New Jersey
With such a registry, it’s hoped that families with autistic relatives can better access state-provided social- and economic-assistance services, as Gloria Rodriguez, director of the Special Child Health and Early Intervention Services for the Department of Health and Senior Services. The information on the registry would remain confidential.
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POSTED IN: Legislation, New Jersey
23 opinions for Mandatory Autism Registry in NJ Proposed
Tara
Nov 18, 2008 at 5:00 pm
I hope this proposal goes down in flames. Autism is not infectious disease, for crying out loud….
Eleanor
Nov 18, 2008 at 5:37 pm
What an appalling idea… I’m sure Hitler would have found such a list very useful!
Regan
Nov 18, 2008 at 5:54 pm
I’m not a New Jerseyite, and not necessarily envisioning worse-case scenarios about Big Brother, but I am wondering how confidential is confidential (I had an interesting experience once trying to opt out of providing our school district with “optional” information about Eleanor–what a ruckus.). If personal information can be opted out and remain blinded and for purely statistical purposes as the provider of the information requests, ‘could be okay. But if someone is not in favor of this, I can understand from a privacy point of view, esp. if one is not seeking public services.
…The data contained in these registries would be used for public health research, needs assessments, and public health investigations.
The notice of proposal appears in the November 17, 2008 issue of the New Jersey Register.
The public has until January 16, 2009 to comment on the proposals. Persons wishing to comment on the proposals must submit their comments in writing to Ruth Charbonneau, Director, Office of Legal and Regulatory Affairs, New Jersey Department of Health and Senior Services, PO Box 360, Trenton, NJ 08625. Written comments on the proposals must be postmarked on or before January 16, 2009, which is the close of the 60-day public comment period for the proposals.
ASDmomNC
Nov 18, 2008 at 6:01 pm
X-Men, Gattaca, and Heroes come to mind. A “registry?” Are you freaking kidding me? Will there be microchipping next?
Ew.
Kristina Chew, PhD
Nov 18, 2008 at 7:30 pm
If the registry weren’t “mandatory,” would that make a difference?
Tara
Nov 18, 2008 at 7:36 pm
Obviously speaking only for myself: yes, it would make a difference.
Mrs. C
Nov 18, 2008 at 8:21 pm
Heil Hitler. Good grief.
And yes, it makes a difference, BUT how often do “voluntary” things become mandatory? Distrustful here.
C. S. Wyatt
Nov 18, 2008 at 8:37 pm
I think there is some confusion in that names / addresses being withheld should result in a simple, accurate, census of autism diagnoses. If I understand the law correctly, the point is to count cases, identify some basic patient traits, and record the data.
As long as no personal data are stored, only basics, this could be quite useful. People demand studies about autism and trends of occurrence, but then panic when a census (a required first step) is proposed.
When I do a study, I store gender, age, and county information — nothing more detailed than school district (never the specific school site).
Without tracking diagnoses, I can’t really tell anyone if there are new cases, similarities in trends, or anything else of value.
So, do we want to know when and where autism is diagnosed? Do we want to know if there are regional or genetic trends? Privacy can be (somewhat) protected, but without any data there can be no epidemiological studies.
Regan
Nov 18, 2008 at 8:46 pm
Before we all go 3-no-trumps in coronaries, there was a second registry for also proposed in this rule proposal for children with severe neonatal jaundice.
Looking at this a little more closely, there already appear to be many registered categories already in place.
Regan
Nov 18, 2008 at 8:49 pm
The entire Rule Proposal is obtainable from the Office of Administrative Law, new Jersey Adminstrative code and Register page.
Search under “autism” and the first entry for November 17, 2008 should be the proposed rules.
http://www.lexisnexis.com/njoal/
There is a very long and detailed summary, which describes the registry, conditions registered, use of the data, confidentiality of the data, impacts on services by data collection, etc.
One stated purpose in NJ, under SUBCHAPTER 2. AUTISM, 8:20-2.1 is to implement the requirements of P.L. 2007, c. 170 (N.J.S.A. 26:2-185 et seq.) by providing for the reporting of diagnoses of autism and for the creation and maintenance of an up-to-date Autism Registry of all reported cases of autism that occur in New Jersey for use in conducting thorough and complete epidemiologic surveys of autism.
Under 8:20-2.3 (e) Pursuant to N.J.S.A. 26:2-188c, nothing in this act shall be construed to compel a child with the diagnosis of autism who has been reported to submit to medical or health examination or supervision by the Department.
(…)
(h)A health care professional shall not report to the Department the personal identifying information of a child diagnosed with autism if the child’s parent, legal guardian or custodian objects to the reporting and a health care professional shall not report to the Department the personal identifying information of an individual through age 21 diagnosed with autism, if the individual through age 21 objects to the reporting.
(i) At the time of diagnosis or prior to submitting the report required by (b) above, the health care professional shall inform the parent, legal guardian, custodian or individual through age 21 of the right to refuse to report identifying information to the Autism Registry and shall provide the parent, legal guardian, custodian or individual through age 21 with a written statement that includes the following:
1. A parent, legal guardian, custodian or individual through age 21 diagnosed with autism who refuses to report identifying information to the Autism Registry must sign the statement;
2. The statement shall become part of the permanent medical record; and
3. When a parent, legal guardian, custodian or individual through age 21 diagnosed with autism refuses to provide identifying information, the diagnosed individual’s sex, county of residence, race, ethnicity, month and year of birth, diagnosis and the diagnostician information shall be submitted to the Autism Registry.
But don’t take my word for it, the entire document is available through the link, as well as instructions for submitting public comment.
Tara
Nov 18, 2008 at 8:55 pm
@C.S. Wyatt,
I understand your point, but I don’t think we necessarily need *mandatory* reporting (especially of this sort, where limited protection of personal data is on opt-out basis) to get enough quality data for epidemiological studies.
In my opinion, it is one thing to give informed consent to participate in epidemiological study and quite another to have it mandated. I can easily see how the existance of this sort of registry could trigger the wave of “reverse” diagnostic substitution.
Kristina Chew, PhD
Nov 18, 2008 at 8:59 pm
Legislation to create an autism registry was one of the nine autism bills put forward in 2007, after the CDC announced that New Jersey had the highest autism prevalence rate (1 in 94) in the country.
We haven’t had a lot of dealings with the state’s Department of Developmental Disabilities—-it’s not hard to get lost in that system.
Tara
Nov 18, 2008 at 9:10 pm
@Regan,
sorry, I think that I am ready for that coronary now :-)
I am left with my jaw on the floor after reading the list of birth defects that have to be reported. There is a list of minor defects which includes things such as Mongolian spots, umbilical hernias, nasal lacrimal duct obstruction - apparently when there are more than two items from the extensive list, they have to be reported. So far I figured out that my mother, myself and all three of my children would get reported as having the birth defect which seems to be somewhat over the top…
Niksmom
Nov 18, 2008 at 9:31 pm
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
Mrs. C
Nov 18, 2008 at 9:43 pm
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.
Justthisguy
Nov 18, 2008 at 9:57 pm
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
Regan
Nov 18, 2008 at 10:12 pm
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.
FXSmom
Nov 18, 2008 at 10:29 pm
Anytime anyone is told they have to give up information it frightens me :(
Emily
Nov 18, 2008 at 10:34 pm
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?
C. S. Wyatt
Nov 18, 2008 at 11:20 pm
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???
ASDmomNC
Nov 19, 2008 at 8:53 am
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?
Navi
Nov 30, 2008 at 11:12 pm
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.
Autism Vox 2008 in Review: August-December
Jan 1, 2009 at 5:06 am
[...] (”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 [...]
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