CDC Obtains Children's Confidential Records Without Parental Consent for Autism

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CDC Obtains Children's Confidential Records Without Parental Consent for

Autism Study, Says NAA

Wednesday March 1, 2:56 pm ET

Parents Express Outrage Over Covert Tactics as CDC Circumvents HIPAA and

FERPA Laws, Prompting a Call for Congressional Investigations

NIXA, Mo., March 1 /PRNewswire/ -- 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

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 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. "

For more information, go to www.nationalautism.org

Contacts:

Fournier (Portsmouth, RI) 401-632-7523

Rita Shreffler (Nixa, MO) 417-818-9030