Federal privacy laws
prohibit virtually anyone but education officials from
accessing a childs school records without parental
consent. But the Centers for Disease Control and
Prevention have been doing it for years in Atlanta, and
most parents werent even told.
The Associated Press has obtained a copy of an
agreement in which the U.S. Department of Education
grants CDC access to records of students in nine
metropolitan Atlanta school systems to study
developmental disabilities. The agreement was signed
Dec. 11, 2000, but both sides say its actually an
extension of a deal that has been active since 1991.
The schools, spanning five counties in the Atlanta
area, were selected as a test group because of their
diverse populations and proximity to CDCs headquarters.
Health officials insist the studies have been useful and
provide the only reliable method of tracking autism,
cerebral palsy, mental retardation and hearing and
visual impairments in children.
Generally when we do surveillance we try to do it on
the total population, said Colleen Boyle, director of
the CDCs Division of Birth Defects and one of three
officials who signed the 2000 agreement. If we only have
a select group or non-representative group then we
really cant talk about whats going on in the community
or population.
For example, a medical journal published a study in
January on the prevalence of autism among children in
metropolitan Atlanta, using student data reviewed
through the agreement. Boyle says CDC was already
tracking autism rates when the agency received a number
of calls from parents, teachers and special education
providers concerned the problem was getting worse.
Although few seem to be arguing against the
scientific usefulness of the research, the method is
worrisome to officials at the American Civil Liberties
Union who say they didnt know private student records
were being reviewed without telling parents.
The government has no business rooting around in
peoples medical files, said Barry Steinhardt, director
of the ACLUs program on technology and liberty. This is
the worst sort of overbearing government that thinks
they have the right to check out our most sensitive
information without consent. Its extremely disturbing
and raises serious constitutional issues.
But Boyle and school officials say the research is
perfectly legal and respects the privacy of each
student.
At issue is the Family Educational Rights and Privacy
Act, which guarantees a childs health and education
records remain confidential but for a few exceptions.
One of them allows an authorized representative of the
Department of Education to review the records, and the
latest agreement essentially gives CDC that title
through 2005.
After that, another agreement would have to be
signed, although a measure pending in Congress would
make it more permanent. The bill, sponsored by Rep. Mike
Ferguson, R-N.J., aims to revise the Birth Defects
Prevention Act of 1998 and, as one of its provisions,
grants CDC access to student records for specific
research purposes.
Because the last agreement between the Department of
Education and CDC was signed under the Clinton
administration, its not clear whether the department _
now under new leadership _ could pull out now. Spokesman
Jim Bradshaw said officials have reviewed that
possibility since learning of the agreement.
Weve become aware of it and are taking a look at it,
Bradshaw said. We have not made a final decision on what
well do if anything.
Pat Bowers, spokeswoman for Atlanta Public Schools _
one of nine systems that has been part of the study _
says CDC researchers can only review specific records
and must leave the names and any other identifying
information out of their report.
They only access those files required to gather the
information they need, Bowers said. The files never
leave the school.
Each research project is usually full of conditions
from local school officials. Although the federal
government could probably circumvent them by threatening
to withhold funding, Bowers says there has always been a
high level of agreement between CDC and the schools on
how each study should be conducted.
Often CDC requires a students entire file, but
sometimes only specific redacted information is
necessary. As an example, Bowers released a letter from
Feb. 23, 2001, in which Atlanta Public Schools outlines
the conditions for CDCs study aimed at determining the
association of childhood vaccines and specific
developmental disabilities.
Your sample consists of 22 students enrolled in the
APS Program for Exceptional Children and 66 comparable
students from the regular program, the letter
stipulates. Since you will not be allowed access to
student records or to personally identifiable
information on individual students, the school principal
may designate a ... staff member or a counselor at the
school to access the data and provide it to you in a
blind format with no student names or identifying
information.
CDC agreed to the demands, Bowers said.
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