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Houston Chronicle
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)
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