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Immunization Registry Abuses:
Texas Department of Health Illegal Collection and Release
of our Private Information
May 1998

Parents Requesting Open Vaccine Education
email PROVE@swbell.net

The National Immunization Tracking System Plans are creating concern among citizens. Actions by the Texas Department of Health show that immunization registries pose a serious threat to privacy and should not exist. Even though laws are in place to protect the citizens of Texas, the Texas Department of Health has broken the law and violated our rights.

Last legislative session (1997), there was a bill proposed to create a statewide immunization tracking registry. It's main purpose was to track parents who did not get their children immunized on time and provide for mailings, automated phone calls to their homes, and home visits by health department staff. The proposed legislation made it mandatory for every child to be included but did not allow for a notation or exemption field for children who were legally exempt from immunization requirements for medical or religious reasons.

Parents were concerned that the state was overstepping its bounds by interfering with issues that are normally covered between a parent and their child's doctor. Parents asked for legislative support to amend the proposed legislation by making it mandatory that the state get written consent from the parent to include the child in the registry (Texas Health and Safety Code Section 161.007 (a)(3), as well as written consent to allow the child's and family's private information like social security numbers and medical records regarding immunizations to be released to anyone Section 161.007 (a) (h). Section 161.009, "Penalties for Disclosure of Information", defines an offense in this section as a Class A Misdemeanor. This final piece of legislation with these consent and privacy provisions in HB 3054 was signed into law on June 18, 1997 and to take effect September 1997.

In February of 1998, TDH posted their proposed rules for implementation of this legislation. The proposed rules drew an unprecedented public response during the comment period by both legislators and parents concerned that the rules ignored and circumvented the intent of the privacy and consent provisions of the law. Prompted by suspicious things stated by TDH staff, on March 23, 1998, I called the immunization division to see if my 20-month-old daughter was in their registry. She was not only in the registry, but she had an ImmTrac (the name of the registry) ID number assigned to her, along with our confidential social security numbers, our address, and personal identifying information. I asked if they could fax the report to me. All that I had to tell them was my daughter's full name, my first name, and her birth date. This is not sufficient to determine if I was truly the parent of this child calling, but they faxed it anyway. I had not given any written consent to be included in the registry at anytime, and I certainly never gave written consent to allow them to fax this out to anyone. The law very clearly requires written consent for both of these scenarios. Last year, parents worked for months with legislators to get these provision added to the law in amendment form to prevent these very events from ever occurring. We told our legislators, and their aides found their children included without consent. They also found it just as easy to get a fax without providing written consent. Being charged with committing a Class A Misdemeanor in Texas is apparently not enough of a deterrent for The Texas Department of Health.

After a legislative inquiry by Senator Jerry Patterson, the author of the consent and privacy amendment, we learned that TDH had taken the personal information on our children from the Bureau of Vital Statistics (Birth Certificate Data) and populated their registry with millions of children years before they had legislative authority or the parental consent required by law.

While the National immunization Program, the National Vaccine Advisory Committee, and the All Kids Count Program continue in a forward motion toward their ultimate goal of a national immunization tracking system network, Texas demonstrates that even privacy and consent laws with criminal and civil penalties are not enough protection. These registries should not exist. They are a threat to our privacy rights and our right to make our own informed health care decisions for our children and families. Texas parents are against the state or federal government collecting and releasing their family health information. High quality public health is a goal that we all share, however, a national vaccination surveillance, monitoring and enforcement system orchestrated by the federal government is not an acceptable means to that end.

Sincerely,
Dawn Richardson

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April 5, 2008

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