The U.S. Department of Education granted the CDC access to the records to study developmental disabilities. An agreement was signed Dec. 11, 2000, and both sides say it was actually an extension of an arrangement 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 CDC's headquarters. Health officials says the studies 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 CDC's 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 can't talk about what's going on in the community or population."
For example, the Journal of the American Medical Association published a study in January on the prevalence of autism among children in metropolitan Atlanta, using student data reviewed through the agreement.
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 didn't know private student records were being reviewed without telling parents.
"The government has no business rooting around in people's medical files," said Barry Steinhardt, director of the ACLU's 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. It's extremely disturbing and raises serious constitutional issues."
But Boyle and school officials say the research is legal and respects the privacy of each student.
At issue is the Family Educational Rights and Privacy Act, which says a child's health and education records must remain confidential with few exceptions. One exception 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 the arrangement 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, would grant 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, it's not clear whether the Education Department — under new leadership — could pull out now. Spokesman Jim Bradshaw said officials have reviewed that possibility since learning of the agreement.
"We have not made a final decision on what we'll do, if anything," Bradshaw said.
Pat Bowers, spokeswoman for Atlanta Public Schools — one of nine systems that has been part of the study — says CDC researchers can review only certain 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."
The research projects usually are 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.
By Jeffrey McMurray