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Thursday, October 8, 2009

New Jersey's New Disabled and Handicapped Child Registry: Destroying the Privacy of the Most Vulnerable

New Jersey Governor Jon Corzine has just signed a law that threatens the basic privacy rights of all children in New Jersey born or diagnosed with a host of disabilities or birth defects.   See this report from   

This law requires all doctors and other health professionals to report the names of all children diagnosed.   On its face this is a breach of the doctor-patient privilege, and there is no "opt out" provision for parents.   The reporting is mandatory.  

Governor Corzine promises us that all information provided to the state government will be confidential.   In reality, "confidentiality" can be measured by the integrity of the least honorable person on the state payroll.   As we all know, public servants in New Jersey are known for their honesty.   (For those of you who doubt the Great Dixon, see and browse through the press releases.)   If confidentiality really were a concern, there would be no reporting requirement on doctors.    The reporting requirement also violates the patient-doctor privilege, and the spirit if not the letter of the HIPAA privacy rules and the current HHS Privacy Rule. 

Ostensibly, the objective of the law is to assure that the parents of these children receive the necessary resources and treatment.   The logic is fatally flawed; it follows that the government-maintained database is necessary to deliver the help.   If that were true, then without the database you have more children developing cleft palates, for example.  

I have two major legal objections (which you should share):

(1) the referrals and recommendations for resources, treatment, information, etc. can be and are done right now, without any mandatory reporting requirement upon doctors and without any children bearing any risk of loss of privacy (and thus the risk of future discrimination) -- in other words, the stated objective of this law is already being achieved, and can continue to be achieved by using far less burdensome means (and this would be one strong avenue of attack in federal court!) than the creation of this database and its consequent dangers, and

(2)  the database risks destroying the privacy of, and exposing to lifelong discrimination, all disabled children -- including the children of parents who have already sourced these resources through their own efforts, and who would literally gain nothing from the law no matter how well-intentioned it is.

In addition, while physical disabilities are harder to conceal, some disabilities are mental but not physical and are not necessarily apparent.  Think about behaviorial disabilities (such as ADHD and autism spectrum disorders) which by their nature are hard to diagnose with certainty.   But if doctors are forced to report every child with certain mental/behavorial disabilities, they will risk reporting children whom they misdiagnose.   A toddler with symptoms that support a diagnosis of autism, for example, may not be autistic at all...but he will be labeled in the database under the New Jersey law.  

If someone gets access to that government database, like a government worker who later enters the private sector, well...twenty years later she might just remember little Johnny's name and make small coffee talk to her friends in HR (in a conversation likely to begin with, "You didn't hear this from me, but...") and voila, little Johnny who's now a completely normal (or even above-average) young adult suddenly can't get a job and can't figure out why.

To be clear, our handicapped children's privacy will depend on the scruples of government workers.   When you go to a government office and deal with surly, rude and disinterested clerks, do they fill you with a sense of confidence that they are concerned workers with integrity and honesty?   Do you want your privacy, and the privacy of your child, to depend on these people?

At present, we are allowed to keep our diseases, maladies and handicaps private.   The right to privacy regarding medical matters is virtually a holy sacrament in some quarters.   The Roe v. Wade  decision revolves -- in a contorted and incomprehensible way -- around the right to privacy.  

Some of this is legally illogical.   Follow my logic...if I am a child and I am diagnosed with a disability, I have no privacy in keeping my disability a secret from the state government.   (And prior to being born, if my mother chooses to kill me she has a near-absolute right to do so because her "right to privacy" outweighs my "right to live.")  But once I choose to fornicate, if I get pregnant or catch an STD, I get an absolute right to privacy.

Talk about a moral hazard.

Today, if you have an embarassing disease like a sexually-transmitted disease, or a major disease like cancer, there is no database tracking you to make sure you do not infect others, or warning your healthy neighbors to stay away from you.   This is true even with HIV, which is merely an incurable disease.  

So let's think what would happen if we replaced the phrase "children with autism" with the phrase "adults with HIV."   How would this database requirement be viewed then?   You could bet your last dollar that the AIDS / HIV lobby would strenuously resist -- and rightfully so -- any attempt at a database.   The AIDS victim registry would raise fears about government-sanctioned discrimination and quaranting.   Hell, they would engage in major civil disobedience.   And they would be completely right on their concerns!   The argument about making sure these sufferers get their treatment is just as valid -- perhaps even more valid than for disabled/handicapped children. So under New Jersey's rationale, why aren't we having mandatory reporting for all AIDS sufferers?   Cancer sufferers?

Do you see now how this New Jersey law has nothing to do with health?  Get the point?

We have patient privacy laws keeping medical information private between doctors, patients and insurers precisely to safeguard the information and prevent the potential for discrimination.   Every time a new party gets access to information, the mere act of transmission involves the potential for a breach, which means an irreversible loss of privacy.

As we know, there are protected classes (the handicapped are one -- that's why we have an Americans with Disabilities Act) for a reason: They are discriminated against. And this database, with its reporting requirement, will make it much easier to discover, track, monitor and discriminate against some of the more vulnerable members of society.

The survivors of the Nazi concentration camps recognize this as branding.  The difference between requiring a class of people to wear yellow stars on their clothes, and this database-reporting requirement, is essentially one of semantics.  

One final comment.   Human history reveals that much evil is couched in terms implying benevolence.   This may be a well-intentioned law (OK, Governor, time for a pat on the back during this election season!)...but it is severely flawed.   Any law which depends on the benevolence of its enforcer is inherently fatally flawed and is a bad law deserving repeal.  This law's danger may only become apparent after some disabled children lose their privacy, their innocence, their rights.

I believe this law is unconstitutional on its face, and have already begun researching avenues for its challenge in federal court.

This law purports to help disabled and vulnerable children. In fact, it is about helping a political class -- yep, those running for election this year -- be able to claim that they are helping. Huge difference. I suggest you remember this distinction the next time any charity comes calling; same principle applies.

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