Student Well-Being

CDC Access to Students’ Health Records Raises Questions of Privacy

By Mark Walsh — April 30, 2003 3 min read

Researchers with the federal Centers for Disease Control and Prevention have used the records of Atlanta-area schoolchildren for years, without parental consent, for studies of developmental disabilities such as autism and cerebral palsy. When the practice was questioned in 1999 by a Department of Education official as a potential violation of privacy laws, the CDC negotiated an agreement with the agency allowing such research to continue through 2005.

The agreement, signed in 2000, gives the CDC status as an “authorized representative” of the U.S. secretary of education under the Family Educational Rights and Privacy Act. That law restricts the disclosure of student records in schools receiving federal money.

The arrangement came to light last week in an Associated Press news story. Representatives of the Education Department, the CDC, and some of the school districts involved all said the arrangement is proper and respects the privacy rights of children whose records were examined.

But a privacy expert interviewed last week is troubled by the disclosure.

“The government really shouldn’t be rooting around in anyone’s medical records without that person’s consent,” said Barry Steinhardt, the director of the American Civil Liberties Union’s program on technology and liberty. “There are legal and constitutional implications here that need to be explored.”

The CDC, based in Atlanta, has used records from nine nearby school districts since 1991 as part of a research effort called the Metropolitan Atlanta Developmental Disabilities Surveillance Program.

CDC researchers “go into schools, review student files, and obtain relevant information” on children with disabilities such as autism, cerebral palsy, and mental retardation, states the Education Department agreement.

A CDC study of the prevalence of autism, published in January in the Journal of the American Medical Association, notes that “public schools were a primary source for case identification” based on special education records maintained by the schools in the mid-1990s.

“Because this activity was considered public health surveillance, parental consent was not required,” the study says.

Concerns Raised

In 1999, LeRoy S. Rooker, the director of the Education Department’s office that enforces student privacy law, “informally advised” participating Atlanta schools that the CDC’s efforts to gather student data without parental consent “would not generally be authorized under FERPA,” according to the later agreement.

It appears that the parties then searched for a way around the legal problem, and they found one by designating the CDC as an “authorized representative” of the education secretary. Under FERPA, such representatives may gain access to student records for limited purposes.

“Without continued access to these records, the [CDC program] will not be able to provide meaningful estimates of the occurrence of developmental disabilities in children,” the agreement states.

A bill pending in Congress would give the CDC permanent access to school records for similar research purposes.

Pat Bowers, a spokeswoman for the 55,000-student Atlanta school system, which participated in the autism study, said the district took steps to protect the privacy of student data.

The CDC request, she said, “was intended to benefit children and their experience in schools.”

Mr. Steinhardt of the ACLU said his concern is with the federal government’s delving into what are essentially medical records rather than educational files.

“There is a history in this country of ‘function creep,’” he said. “We need to worry ... that a record created for one purpose is rarely limited to that purpose.”

One problem for parents who feel aggrieved by the disclosure: Under a U.S. Supreme Court decision last year, there is no private right to sue over alleged violations of FERPA.

The only recourse is to complain to the Education Department—in this case, the same agency that signed the agreement authorizing the CDC research.

Related Tags:

Events

Student Well-Being Webinar Boosting Teacher and Student Motivation During the Pandemic: What It Takes
Join Alyson Klein and her expert guests for practical tips and discussion on how to keep students and teachers motivated as the pandemic drags on.
This content is provided by our sponsor. It is not written by and does not necessarily reflect the views of Education Week's editorial staff.
Sponsor
Student Well-Being Webinar
A Holistic Approach to Social-Emotional Learning
Register to learn about the components and benefits of holistically implemented SEL.
Content provided by Committee for Children
This content is provided by our sponsor. It is not written by and does not necessarily reflect the views of Education Week's editorial staff.
Sponsor
Student Well-Being Webinar
How Principals Can Support Student Well-Being During COVID
Join this webinar for tips on how to support and prioritize student health and well-being during COVID.
Content provided by Unruly Studios

EdWeek Top School Jobs

Arizona School Data Analyst - (AZVA)
Arizona, United States
K12 Inc.
Software Engineer
Portland, OR, US
Northwest Evaluation Association
Proposal Writer
Portland, OR, US
Northwest Evaluation Association
CCLC Program Site Director
Thornton, CO, US
Adams 12 Five Star Schools

Read Next

Student Well-Being Fauci's Latest on Vaccines for Young Kids: Not Likely This Year
A COVID-19 vaccine probably won’t be ready for elementary students until 2022, said Dr. Anthony Fauci, walking back prior comments.
2 min read
Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, listens as President Joe Biden visits the Viral Pathogenesis Laboratory at the National Institutes of Health on Feb. 11, 2021, in Bethesda, Md.
Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, listens as the president visits the National Institutes of Health on Feb. 11.
Evan Vucci/AP
Student Well-Being Opinion New Research Explains Why Confessions Are Convincing
Admitting mistakes makes you come across as knowledgeable—and it’s a good way to model intellectual humility.
Sam Maglio
2 min read
Images shows a stylized artistic landscape with soothing colors.
Getty
Student Well-Being Spotlight Spotlight on Forging Student Connections & Growth Mindsets
In this Spotlight, discover ways to foster a growth mindset to re-connect and engage with students.
Student Well-Being Fauci Says Young Kids Could Start Getting Vaccinated by September
A COVID-19 vaccine for children as young as 1st grade may be approved by next school year, said Fauci. But some public health experts aren't so sure.
5 min read
First grade teacher Bella Legault bends down to greet a nervous incoming student at Foundation Preparatory School in New Orleans on Monday, Oct. 12, 2020.
First grade teacher Bella Legault bends down to greet a nervous incoming student at Foundation Preparatory School in New Orleans on Oct. 12.
Chris Granger/The Times-Picayune/The New Orleans Advocate via AP