CDC With Holds Information

Scientists want agency to provide data on flu to help with vaccines
By Rebecca Carr
Monday, October 3, 2005

WASHINGTON -- Scientists are accusing the Atlanta-based Centers for Disease Control and Prevention of hoarding crucial data that could help vaccinations at a time when there is growing concern about a possible influenza pandemic.

The nation's disease control center is also under fire from open-government advocates for recently issuing a guide on how to keep data, documents and information from public inspection. Called the "Information Security" manual, the 34-page document provides officials 19 categories to shield data from public scrutiny without obtaining a "secret" classification.

Open-government advocates say the CDC's actions run counter to its mission. The CDC's role is to disseminate public health information, not withhold it, said Steven Aftergood, director of the Federation of American Scientists' Project on Government Secrecy, which first published the leaked manual on its Web site.

"The CDC is not the CIA," Aftergood said. "Withholding data is not just bad public policy, it is bad science."

Withholding data impedes the normal process of scientific replication of results and of peer review, Aftergood said. The CDC's behavior of withholding "is just baffling," he said.

In its Sept. 22 issue, the journal Nature reported widespread concern among influenza researchers that too little flu data collected by the CDC is made available for research, hindering efforts to develop vaccines.

One National Institutes of Health researcher said that other than the occasional large deposits of data that accompany published papers required by journals, information is "coming through an eyedropper."

Influenza researchers said their work would progress faster if they could access the CDC's databases of virus sequences and immunological and epidemiological data.

Nature quoted Michael Deem, a scientist at Rice University, as saying: "Many in the influenza field are displeased with the CDC's practice of refusing to deposit sequences of most of the strains that they sequence."

Nature's own analyses found that the CDC deposited less than a tenth of the 15,000 influenza A sequences in the gene database Genbank and the influenza sequence database at the Los Alamos National Laboratory. By comparison, a consortium led by the National Institute of Allergy and Infectious Diseases deposited more than 2,800 sequences this year alone.

In response to questions, Dr. Nancy J. Cox, chief of the influenza branch of the CDC, said that though the agency is committed to sharing information in an open and timely manner, it must be "balanced against the needs for maintaining high standards for data quality and for protecting sensitive information when the situation warrants."

Cox said the agency wants to improve its data-sharing efforts. The agency recently revised its policy on sharing data to meet its goal of sharing information in a timely way, she said.

Cox said, "The purpose of this new policy is to ensure that CDC routinely provides data to its partners for appropriate public health purposes and that all data are released and/or shared as soon as feasible without compromising privacy, federal and state confidentiality agreements, propriety issues, national security interests, or law enforcement activities."

One concern the CDC may have about sharing data is how it would affect any partnership it might have with vaccine manufacturers, said David Webster, president of Webster Consulting Group Inc., a health-industry consulting firm.

The CDC might be concerned that those manufacturers might not be able to recoup their investment if the information is widely available.

UPDATE: Here is the CDC's document telling their staff how to with hold information from the public that was referred to:

http://www.fas.org/sgp/othergov/cdc-sbu.pdf

The Sensitive But Unclassified label "is applied to unclassified information that may be exempt from mandatory release to the public under FOIA."

So I want to know who decides what information is able to be kept from the public? If it truly needs to be kept from the public, then why is it not given a "classified" status?

This policy sucks.