Whose Planet Is It Anyway?

Tuesday, December 09, 2008

Mandatory Autism Registry Proposed

The state of New Jersey is currently considering a proposal to create a mandatory autism registry as part of a "birth defects registry." The public comment period began in mid-November and will continue until January 16, 2009. I've reposted the notice of proposal below:

The Division of Family Health Services in the Public Health Services Branch of the Department of Health and Senior Services proposes new rules and amendments at N.J.A.C. 8:20, which establishes the Birth Defects Registry.

The proposal would establish an autism registry and a severe neonatal jaundice registry.

This proposal would require health care professionals to report diagnoses of autism in children from birth through twenty-one years of age. N.J.S.A. 26:2-187 requires the Department of Health and Senior Services to implement the reporting of autism and to establish an autism registry. Autism is a developmental disorder of brain function that is typically manifested by impaired social interaction, problems with verbal and nonverbal communication and imagination, and unusual or severely limited activities and interests.

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.

The proposal would require clinical laboratories to report newborns with severe neonatal jaundice, a condition that is caused by a buildup of bilirubin, an orange-yellow pigment found in bile. Toxic levels of bilirubin can cause severe neurological damage called kernicterus. N.J.S.A. 26:8-40.21 requires the Department to establish a severe neonatal jaundice registry.

The proposal would also make the reporting requirements for congenital conditions more consistent with the Centers for Disease Control and Prevention (CDC) Guidelines, and extend the reporting requirements for congenital conditions from birth through five years of age.

Under the proposal, the information on individuals with these conditions that is reported to these registries would remain confidential. 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.

You know what to do, people. Let's get those keyboards clacking! Be sure to get your comments written well in advance of the deadline, as they must be submitted through snail mail. The Autistic Self Advocacy Network also will be submitting a comment, and Ari Ne'eman has requested that members of the autistic community send suggestions to him regarding what should be included in that comment. He can be reached at
aneeman@autisticadvocacy.org and would appreciate your input.

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  • Did I miss something? Was there any explanation as to exactly what these proposed registries will be used for?

    If you have a look at this letter written to the Medical Journal of Australia about an Australian autism registry you will see that the researchers will not be satisfied with the type of autism database that results from the application of proper consent procedures. Many people will refuse to give information (and good on them), this will seriously bias the data, the researchers will want identifying data, and the researchers will, in response to ethical obstacles to getting information, try all manner of dubious tricks to ferret out as much information as they can about people who have been given an autism diagnosis.


    By Blogger Lili Marlene, at 6:58 AM  

  • I stumbled upon your blog while researching the State of NJ birth defects registry. My son has a minor birth defect which will probably never bother him. I received a letter from the NJ department of Health and Senior services saying he has been REGISTERED. I called to ask them to remove his name from this registry and was told that there was nothing I could do about it. On the letter was a case number which they asked for. From this case number they were able to get to his pediatrition and his specialist. Knowing a little about human history, this kind of tracking system frightens me.

    By Anonymous Anonymous, at 7:23 AM  

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