PRESS RELEASE For Immediate Release: March 1, 2006

Contact: Rita Shreffler, NAA (Nixa, MO) 417-818-9030 Wendy Fournier, NAA (Portsmouth, RI) 401-632-7523

CDC OBTAINS CHILDREN’S CONFIDENTIAL RECORDS WITHOUT PARENTAL CONSENT FOR AUTISM STUDY

Parents Express Outrage Over Covert Tactics as CDC Circumvents HIPAA and FERPA Laws, Prompting a Call for Congressional Investigations

Nixa, MO – The National Autism Association (NAA) today expressed dismay over the CDC’s continuing ability to obtain confidential medical and educational records of children without parental knowledge or consent for an autism study conducted largely in secret.

Last week, an Arkansas parent confirmed that not only had her daughter’s medical records been accessed without her knowledge, but school records had also been secretly obtained and used without her permission.  News stories last year from Colorado revealed that medical records had been turned over to the CDC in apparent violation of the Health Insurance Portability and Accountability Act (HIPAA), enacted to protect the privacy of patients. Under the Family Educational Rights and Privacy Act (FERPA), such educational records are considered confidential.

A former employee of the Arkansas school district informed the child’s family of the secret gathering of information after the fact, indicating that school personnel had been expressly forbidden to inform parents of the study, or that confidential records had been accessed and re-typed.

“This is an outrageous invasion of privacy,” said NAA President Wendy Fournier, “one that the CDC must now explain. This agency has become notorious in the autism community for its mishandling of data linking mercury in vaccines to the development of autism.  For the CDC to now be given carte blanche access to our children’s confidential records is frightening. Why bother having such laws as HIPAA and FERPA, when government can obviously obtain whatever information it wants, even that of innocent children?”

Calling upon Congress to investigate the activities of the CDC regarding its methods of collecting data for the study, NAA Board Chair Laura Bono stated, “The CDC has continually set up roadblocks to outside access of the taxpayer-funded Vaccine Safety Datalink which could hold answers for the hundreds of thousands of children now diagnosed with autism. It’s an alarming irony that the public is denied access to information it’s clearly entitled to, while this agency continues to monitor personal information which by law is considered confidential.”

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