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Tracking Your Children Down: State and Federal Immunization Registries

During the 1993 public policy debate over the massive Health Care Plan recommended by First Lady Hillary Clinton, a broad-based, non-partisan coalition was established to defeat the implementation of a federally-funded inoculation database that was a component of the "Comprehensive Child Immunization Act." This database would have established a tracking mechanism for every child born in the United States. The coalition was successful in having the database authorization removed from the legislation.

Six months later, an amendment was covertly attached to a bill that allowed for the creation of STATE inoculation databases, in contrast to the federal database that raised so much opposition. A $400 million federal price tag was attached to pay for the implementation of the state databases. The measure was approved, and to date twenty-nine states have fully functioning inoculation databases.

The creation of these state databases have been accomplished in no small measure to several federal agency mandates and a mammoth 1996 health care bill, the Health Insurance Portability and Accountability Act (HIPAA). Health and Human Services Secretary Donna Shalala signed an order that allowed the Social Security Administration to release all newborn's Social Security Numbers (SSN) to the states for the establishment of the state databases.

HIPAA mandated that every patient, employer, provider, and health plan be given a unique health identifier number; that standards for electronic transmission be enacted; and that national code sets for collection of individually identifiable medical information be established. The bill will allow the HHS Secretary to establish her own privacy guidelines for federally-funded medical databases - including the state inoculation databases - if Congress does not enact their own privacy standards before August 1999.

A Texas Database Horror Story

An article in the April 25, 1998 edition of WORLD Magazine examines one Texas mother's discovery that the Texas Department of Health (TDH) is tracking her children - and all children in the state through their inoculation records. Dawn Richardson, who has been one of the primary leaders for vaccine education in the state, had growing concerns that databases of children's medical information were being compiled in government databases without parental consent and eventually used by HMOs or insurance carriers to discriminate against certain families.

Her fears were increased when she placed an anonymous phone call to the TDH on March 23rd and discovered that her child's information was already on that agency's database. Her horror was compounded when an agency official faxed her child's information to the masquerading Ms. Richardson by simply providing the child's name, birth date and address - information readily available from public sources. This raised serious privacy concerns about whom else could get access to the information. To verify this procedure as common practice, Ms. Richardson and several friends repeated and documented their experiment several times over the following week, with the same results.

The WORLD article stated that two state senators, armed with Ms. Richardson's information, began an investigation into TDH information gathering practices, only to discover that TDH had collected information on more than three million children in Texas since 1994. TDH officials had also acquired over half a million names from birth certificates, a practice that was halted after parents discovered the activity and protested.

One TDH official was quoted as saying, "We don't know where this [concern] is coming from. We've been collecting data since 1994 and no one has ever questioned us about it before. We're just trying to help people." But the road to Hell is paved with the best of intentions, it seems. The article noted the privacy concerns expressed by Agneta Breitenstein, director of the Health Law Institute in Boston: "There are three things that are always true when registries are created: One, there will always be more information collected than is needed to complete the task; two, it will always be kept longer than we are told; and, three, it will always be used for purposes other than intended."

Present Privacy Threat

With the establishment of the state databases, the health care establishment has a perfect framework to implement a federal "immunization registry", and they are determined to do such. This is being accomplished through the Center for Disease Control's National Immunization Registry Clearinghouse. The intent of this registry effort is to integrate all of the state databases into one central (i.e. federal) tracking system controlled by the CDC and HHS.

This new system will track every child using information gathered from both public and private health systems. As one CDC publication recently stated: "CDC supports the ultimate goal of enrollment of all U.S. preschool children in a state or community immunization registry."

Privacy advocates are alarmed at this proposal. As Barbara Loe Fisher, President of the National Vaccine Information Center, recently stated during testimony to a CDC committee:

And so, the people, when they are informed of your plan, understand all too well that state vaccine tracking registries being promoted to the media and Congress in the name of protecting the public health are simply a smokescreen for the creation of a government-operated system that will further invade their privacy and take away already endangered liberties. They don't want government, drug companies and insurance company employees or the local school nurse to monitor their movements from state to state and be privy to their health records and the most personal details of their lives. They want that information to remain a private matter between them and their personal physician, as it has always been until now.

It seems the fears of privacy advocates are based in reality. Children who are not part of the immunization registries are being denied health insurance coverage and being prohibited from enrolling in public schools. Parents that have not participated in the registries have had had their children seized by health officials for "endangerment" of the child. In addition, not all states allow for religious exemptions for parents who are concerned about their child's health or privacy. Engagement in this policy is in spite of the fact that local and private health agencies have achieved a 98 percent immunization rate for kindergartners without massive tracking databases.

Congress is also considering legislation that would implement a federally operated immunization database to tag, track down and force every citizen to comply with federal vaccination policies. This will be accomplished by assigning a "unique personal identifier" that every citizen will be required to carry for the rest of his or her life.

Allowing the any government agency to track and monitor citizens smacks against many of our liberties specifically protected by our Constitution. However, the immunization registries are just one of many tracking databases that are compiling profiles on US citizens, and to implicitly trust government officials to take care of such private and intimate personal information is a hazardous course indeed. The recent example seen of Texas in creating a database by "mining" birth certificate records and Social Security applications aptly demonstrates that neither state nor federal officials can be trusted with our private information.

For more information about the "immunization registry", contact:

National Vaccine Information Center
512 W. Maple Ave. #206
Vienna, VA 22180
703/938-0342 office
703/938-5768 fax

Citizens for Choice In Health Care
1954 University Avenue West, Suite 8
St. Paul, MN 55104
612/646-8935 office
612/646-0100 fax

Visit the National Immunization Registry Clearinghouse from the CDC:

Read "A Shot in the Arm" from WORLD Magazine:

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April 5, 2008

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