National Vaccine Advisory Committee

Immunization Registries Workgroup on Privacy and Confidentiality

May 14, 1998

Omni-Shoreham Hotel, Washington, D.C.

Statement by Barbara Loe Fisher, Co-Founder & President

National Vaccine Information Center 

Thank you, Dr. Breiman and Dr. Cordero for inviting the National Vaccine Information Center to present expert testimony at this workshop. As you know, the National Vaccine Information Center is a national, non-profit educational organization founded in 1982 by parents of vaccine injured children. We are not anti-vaccine nor do we oppose vaccination requirements. We are pro-information and support the human right of all citizens to informed consent to any medical procedure which carries the risk of injury or death, including vaccination.

Our organization played a pivotal role in the development and passage of the National Childhood Vaccine Injury Act of 1986. In addition to providing official acknowledgment that vaccines carry significant risks for injury and death, this historic law also created the National Vaccine Advisory Committee and the National Vaccine Program Office. Our 16-year record of vaccine safety and consumer advocacy work is a long and very public one and we appreciate the opportunity to present the views of tens of thousands of citizens from every state in America who are deeply concerned about the threat to constitutionally protected freedoms inherent in the creation of a government-operated electronic database designed to tag and track every American citizen from birth.

Anyone who researches the history of vaccine tracking registries in America cannot fail to be impressed by the absolute clarity of vision and strength of purpose on the part of public health officials in the Department of Health and Human Services and the corporate executives of each of the major vaccine manufacturers as well as the Robert Woods Johnson Foundation, who have invested an enormous amount of effort and hundreds of millions of dollars into creating the framework for a national electronic database to tag and track citizens to enforce compliance with government vaccination policies. The single minded devotion by these stakeholders over the past seven years to achieve this goal has been remarkable.

Just as remarkable, however, has been the way the goal has been doggedly pursued behind closed doors in the offices of government health agencies; in the boardrooms of pharmaceutical companies; and by special interest lobbyists in the halls of Congress without the knowledge of the average American citizen. The people never voted in 1995 to allow government health officials to routinely appropriate childrens' social security numbers without the informed consent of their parents so vaccine tracking registries could be set up in half the states.

Until now, after the system is firmly in place and about to be implemented, the people of America have never been asked if they want anyone to tag and track their movements from state to state and be privy to the details of their health care choices without their informed consent and, so, the National Vaccine Information Center is asking mothers and fathers, grandmothers and grandfathers in every state what they do think.

We are overwhelmed by the response we have received in just one week of mail that is coming in so fast we haven't been able to process it quickly enough to bring all of it here today.

What American citizens from all walks of life are telling us is that they don't want Big Brother breathing down their necks and telling them what health care choices to make anymore than they want Big Brother breathing down their necks and telling them who to vote for on election day. They are telling us in a loud and clear voice that they are tired of being forced, without their informed consent, to use every vaccine the drug companies produce and public health officials decide to mandate.

They know that scourges like smallpox and polio have been conquered using traditional public health measures and that America has achieved a 98 percent vaccination rate for children entering kindergarten without a massive government-operated vaccine tracking registry. They also understand that chicken pox is not smallpox and hepatitis B is not like polio, and resent being forced to act like all diseases for which vaccines are developed are a threat to the existence of the human race and necessitate the violation of human rights and the sacrifice of constitutionally protected liberties in order to eradicate them. Educated health care consumers instinctively know that a one-size-fits-all, narrow-minded approach to disease control is dangerous when genetic variability and unique environmental factors can put some children more at risk for vaccine-induced injury and death than other children and, yet, almost no child is screened out of the mass vaccination program.

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 endangered liberties. They don't want government, drug company 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.

The people of America, when they are informed about your plan, understand quite clearly the threat it is to basic human freedoms that our forefathers fought for and died to give to us, including: a man's human right to self determination; a man's human right to obey the judgment of his conscience; and a man's human right to be free from the tyranny of any government policy that employs the utilitarian rationale, judged to be immoral at Nuremberg 50 years ago, which justifies the sacrifice of individual human lives without their informed consent for what the majority has determined to be "the greater good."

The people are going to be heard on this issue.

In that regard, we are submitting written testimony on behalf of Dawn Richardson and Rebecca Rex, co-founders of PROVE, who have experienced first-hand the threat to privacy posed by the government-operated vaccine tracking system in Texas. The arrogant violation by public health officials of a state law to protect individual citizens' privacy is a poignant harbinger of what will come if a federal mandate, brokered by wealthy special interest groups and powerful policymakers inside the Beltway, is used to supersede state laws and crush the will of the people.

The more than 3,000 petitions you see here today that we have collected from all over the country in less than a week are just the beginning. In the words of our citizen's petition:

Whereas the National Vaccine Advisory Committee has worked with federal and state government officials to require proof that 10 vaccines have been administered to a citizen as a pre-condition to enter daycare, elementary school, high school and college or to receive medical care, health insurance and basic social services; and

Whereas the National Vaccine Advisory Committee is working with federal health officials and vaccine manufacturers to develop more than 200 vaccines, including an AIDS vaccine, many of which will be recommended by government officials for required use by all citizens; and

Whereas the National Vaccine Advisory Committee has worked with government officials and vaccine manufacturers to set up "Immunization Registries" in states that will become part of a national, government-run, electronic tracking system to monitor every citizen's health care records; and

Whereas this national vaccine tracking system is a fundamental violation of privacy and civil liberties which can serve to limit health care options and threaten the human right to informed consent to medical procedures which can cause injury or death; and

Whereas information contained in this national vaccine tracking system could be used to discriminate against and economically or socially punish loving, conscientious parents and their children if they do not conform with every government recommended health care policy;

Now, therefore, I call upon the National Vaccine Advisory Committee and the United States Congress to modify the current "Immunization Registry" proposal to require a citizen's prior written consent to be enrolled in any vaccine tracking system and protect a citizen's right to make informed, voluntary health care decisions, including vaccination decisions, without being subjected to economic or other punitive sanctions by the government.

Because there can be no guarantee that an electronic database operated by the government for the purpose of tagging and tracking every citizen will not be used to punish citizens for non-compliance with federal health care or other policies, the National Vaccine Information Center opposes the creation of any tracking system, including vaccination tracking registries.