Provided By: The Associated Press
Last Modified: 4/20/2003 12:58:23 PM

Federal privacy laws prohibit virtually anyone but education officials from accessing a child's school records without parental consent. But the Centers for Disease Control and Prevention have been doing it for years in Atlanta, and most parents weren't 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 it's 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 CDC's 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 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, 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 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 perfectly legal and respects the privacy of each student.

At issue is the Family Educational Rights and Privacy Act, which guarantees a child's 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, it's 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.

"We've become aware of it and are taking a look at it," Bradshaw said. "We have not made a final decision on what we'll 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 student's 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 CDC's 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.


(Copyright 2003 by The Associated Press. All Rights Reserved.)