Student Well-Being

CDC Access to Students’ Health Records Raises Questions of Privacy

By Mark Walsh — April 30, 2003 3 min read
  • Save to favorites
  • Print

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:

Commenting has been disabled on edweek.org effective Sept. 8. Please visit our FAQ section for more details. To get in touch with us visit our contact page, follow us on social media, or submit a Letter to the Editor.


Events

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
Teaching Webinar
What’s Next for Teaching and Learning? Key Trends for the New School Year
The past 18 months changed the face of education forever, leaving teachers, students, and families to adapt to unprecedented challenges in teaching and learning. As we enter the third school year affected by the pandemic—and
Content provided by Instructure
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
Curriculum Webinar
How Data and Digital Curriculum Can Drive Personalized Instruction
As we return from an abnormal year, it’s an educator’s top priority to make sure the lessons learned under adversity positively impact students during the new school year. Digital curriculum has emerged from the pandemic
Content provided by Kiddom
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
Equity & Diversity Webinar
Leadership for Racial Equity in Schools and Beyond
While the COVID-19 pandemic continues to reveal systemic racial disparities in educational opportunity, there are revelations to which we can and must respond. Through conscientious efforts, using an intentional focus on race, school leaders can
Content provided by Corwin

EdWeek Top School Jobs

Teacher Jobs
Search over ten thousand teaching jobs nationwide — elementary, middle, high school and more.
View Jobs
Principal Jobs
Find hundreds of jobs for principals, assistant principals, and other school leadership roles.
View Jobs
Administrator Jobs
Over a thousand district-level jobs: superintendents, directors, more.
View Jobs
Support Staff Jobs
Search thousands of jobs, from paraprofessionals to counselors and more.
View Jobs

Read Next

Student Well-Being Opinion Educators, Be Future-Ready, But Don’t Ignore the Present
Being ready for what lies ahead is important, but we also need to gain a better understanding of the here and now.
5 min read
shutterstock 226918177
Shutterstock
Student Well-Being Opinion How to Prioritize Student Well-Being This Year
Use the Student Thriving Index to find out where your kids stand. Because you cannot manage what you cannot measure.
2 min read
Images shows a stylized artistic landscape with soothing colors.
Getty
Student Well-Being Spotlight Spotlight on Supporting Teachers & Students
In this Spotlight, evaluate your district and what supports your schools offer, assess attendance policies to avoid burnout, and more
Student Well-Being What the Research Says Child Hospitalizations Spike Under Delta, Particularly in Low-Vaccination States
Nationwide, the number of children and teens hospitalized due to COVID-19 has ballooned nearly tenfold since midsummer, new CDC data show.
2 min read
hopital stethescope 1222194507
Aleksandr Titov/iStock/Getty