Monday, October 03, 2005

Flu data constipation at CDC: laxative needed

The Atlanta Journal Constitution has finally picked up on Declan Butler's excellent Nature piece from two weeks ago about CDC's failure to share flu data. [NB: a post appeared on Effect Measure within three minutes of the end of the Nature press embargo on September 22. We were surprised Butler's piece wasn't picked up by others in the blogosphere or MSM.] The AJC reports the Federation of American Scientists' (FAS) project on government secrecy has now published the34 page leaked manual containing CDC's "Information Security" policies on their website (.pdf here).
"The CDC is not the CIA," [FAS director Steven] Aftergood said. "Withholding data is not just bad public policy, it is bad science," he said, because it impedes the processes of peer review and the scientific replication of results. He called the CDC's policies "just baffling."

Tom Skinner, spokesman for CDC Director Dr. Julie Gerberding, could not respond when asked about the manual on handling "sensitive but unclassified" information, which was released July 22, because he had not seen it. He asked a reporter to e-mail a copy to him.
What is CDC's explanation? Their initial response was, of course, "national security concerns" over location of laboratories where potential biowarfare agents are stored and worked on. Maybe they are more concerned about the reaction of the surrounding communities, but in any event it isn't relevant to sharing flu genetic sequence data, which is the concern of flu scientists.

Flu branch director Nancy Cox's statement is equally weak.
Dr. Nancy J. Cox, chief of CDC's influenza branch, said the increasing focus on influenza worldwide has brought a deluge of requests for information that the CDC cannot easily accommodate.

"Given the sheer volume of such requests, we have had to make hard choices about how to respond because we do not have the capacity to comply with all requests while also meeting our other public health responsibilities," she said in a written response to questions.

One unnamed National Institutes of Health researcher told Nature that, other than the occasional large deposits of data required by journals to accompany published papers, information from CDC is "coming through an eye dropper."
What flu researchers want, however, is for CDC to deposit the sequences they have in GenBank and similar repositories. This should have been an automatic procedure.
Nature quoted Michael Deem, a physicist at Rice University in Houston, 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 in New Mexico. By comparison, a consortium led by the U.S. National Institute of Allergy and Infectious Diseases deposited more than 2,800 sequences this year alone.
So what else might be going on?
One potential concern that the CDC may have about sharing data is how it would affect any partnership it might now have with vaccine manufacturers, said David Webster, president of Webster Consulting Group, a health industry consulting firm based in Pennsylvania. The CDC might be concerned that those manufacturers might not be able to recoup their investment if the information is made widely available, he said.

"The CDC views partnerships with vaccine manufacturers as an indispensable skill set to get vaccinations manufactured and distributed on extremely short notice," Webster said. "If you don't provide strong commercial incentives for research and development, then public health will suffer enormously because a vaccine will not be developed."
This is really over the top, if true. Restricting data to provide incentives to certain companies that might be destroyed if other companies got the data and decided to compete with them? How is competition dampening activity? This is just providing a safe and privileged haven for a few Big Pharma concerns to pillage the treasury once again.

This isn't an isolated policy, as open government activists (both conservative and liberal) point out.
The CDC manual on keeping a lid on information is surprising to see at a federal agency charged with dispensing health information, said Rick Blum, executive director of, an umbrella group of more than 40 conservative and liberal groups concerned about government secrecy.

"I think it's a perfect example of how out of control our policies on the free flow of information have become," Blum said. "You have many different, confusing, overlapping repetitive names designed to keep information from the public."
This sorry example shows once again how far CDC has departed from its public health mission to cater to the mantra of "marketing," this time literally and not figuratively.

The story speaks for itself.