Tracking System and Privacy
Sept. 15, 2002
Immunize against privacy violations: Uphold law
By DAWN RICHARDSON and REBECCA REX
As parents, we can all relate to the challenges of teaching our children right from wrong. One basic universal lesson from childhood is that you don't take something that doesn't belong to you without permission.
This fundamental ethical principal is the primary reason why the Texas Legislature overwhelmingly passed and the governor signed a law requiring doctors to ask a parent's permission before they release a child's confidential immunization record and enter it into a state government operated immunization surveillance database.
Some health department employees and medical trade associations are alleging that fundamental parental and medical privacy rights are a burden and not worth preserving. They want to gut the current law and require that all doctors and insurance companies release every child's private immunization record and identifying information to the Texas Department of Health without parental knowledge or consent. Under their proposal, a written request by a parent directly to the state agency to remove their child from the registry would trigger the child's information being moved to yet a another TDH database of "non-consenters," still resulting in the tagging and tracking of every single child. Even though there would be nothing a parent could do to stop the unauthorized release of their child's records to TDH or to prevent their child from being included in a TDH database, they are deceptively calling this proposal an "opt-out" system.
It gets worse. While registry proponents have been promising that the data is safe and secure, for the last six years they have been stealing it behind our backs in total defiance of the current law.
Almost a year after the required informed consent law was passed, a legislative staffer who personally worked on the legislation learned that his children were being tracked by TDH without his permission. This prompted a senator's legislative inquiry, which revealed that 3.3 million Texas children had been entered illegally by TDH. Personal information, including names, addresses and parents' Social Security numbers, had been downloaded into the immunization database from the child's confidential birth certificate records. Although a peace offering by the health commissioner resulted in hundreds of thousands of these illegally obtained records being purged, many parents have reported that even though they never gave consent, their children are still in the database and their attempts to have their child's record removed have been unsuccessful.
It didn't stop there.
Today, TDH obtains what they consider to constitute positive "opt-in" informed consent from a one millimeter-sized check box on the birth certificate application to which hospital staff frequently check "yes" for the mother who is busy delivering her baby at the time the form is filled out. Parents who have known to ask for the form to consciously look and check off "no" on registry consent question 19(b) have reported that hospital staff sometimes will even retype their form and change the answer to yes. These subversive tactics are the way that TDH is able to make the highly questionable claim that all these parents "want" to participate in the registry. The public needs to know that the reasoning of those who are attacking our current "opt-in" law is weak; as weak as their efforts have been to follow it.
For example, we don't have an immunization rate problem; we have bureaucrats with a self-serving math deficiency. The Centers for Disease Control and Prevention immunization surveys cited include more doses of vaccines than our state law requires, so even when children are fully immunized according to the law in Texas, they don't count. The truth is that when looking at individual rates for individual vaccines, we are already in the 80 and 90 percentiles for 2-year-olds and in the high 90 percentile overall for kids entering kindergarten.
In fact, gutting the existing parental consent provisions would put parents who care about medical privacy in the position of having to choose between having their kids vaccinated or keeping their children's medical records out of an intrusive government database. That can only have a negative affect on immunization rates.
Just as many parents don't want the state tracking and micromanaging their health-care choices for their children, many private practice doctors have no interest in having their practices watched and their performance delivering vaccines rated. We've spoken with many doctors who feel they can keep track of a child's records just fine and don't want or need any help from TDH. Forcing a doctor to release the confidential medical record of a child against the will of a parent will drive a wedge of mistrust in a relationship crucial to the health of the child.
Since the only way TDH is willing to populate a statewide immunization
tracking system is through deceit and brute force, maybe it doesn't need to exist at all. Certainly the legislature should not reward unethical and illegal behavior with more power and control. They should look for ways to make TDH and doctors follow the existing law. In the meantime, do you know where your children's medical records are?
Richardson and Rex are co-founders of Parents Requesting Open Vaccine Education (PROVE)