For better understanding of the evolution and spread of viruses like H5N1, prominent medical researchers announced on August 24 the formation of a consortium, where all information about the avian influenza will be shared.
The launch of the Global Initiative on Sharing Avian Influenza Data (GISAID) was announced in a letter published online on August 24 by Nature that was signed by 70 scientists and health officials. Dr. Nancy Cox, head of the Influenza Division at the US Centers for Disease Control and Prevention (CDC), and Ilaria Capua, an Italian veterinary virologist who is a leading advocate of greater sharing of H5N1 genetic data, are among those who signed the letter.
"The Initiative is coming together to work around restrictions which have previously prevented influenza information sharing, with the hope that more shared information will help researchers understand how viruses spread, evolve, and potentially become pandemic," states a news release on the GISAID Web site.
The consortium "is open to all scientists, provided they agree to share their own data, credit the use of others' data, analyze findings jointly, and publish results collaboratively," the release says. The Nature letter says that data will be published in three public databases "as soon as possible after analysis and validation, with a maximum delay of six months."
According to a Nature news article published on August 24, the contributors have agreed to deposit genetic information in safe sections of existing public databases, though the details are yet to be worked out. Though initially, the data will be accessible only to the members of the consortium, will be opened to public access within 6 months.
According to the consortium the three databases participating in the International Nucleotide Sequence Database Collaboration: EBML in the United Kingdom, DDBJ in Japan, and GenBank in the United States will be made use of by it.
This announcement influenced the accessibility of genetic data on influenza viruses.
A few days ago, the CDC announced that it was depositing the blueprints for 650 human influenza viruses in GenBank, a public database, and would release data on many flu viruses every year hereafter. The viruses collected in the United States provided the data.
The withholding of genetic sequences of flu viruses, especially H5N1 has been a major cause of concern for scientists. These informations are accessible to the World Health Organization (WHO) that releases the data only with permission from the country of origin. Indonesia, the country hit badly by H5N1 flu, refused to release data on that virus. But recently, a change in the attitude was seen.
Cox said the aim of GISAID is to share clinical and epidemiologic information as well as genetic data on bird flu cases, in a telephone interview.
"The aim is that eventually the data will be linked together so there will be not only the sequence data but also the clinical and epidemiologic data," she told CIDRAP News. "The sequences become much more meaningful with other data linked to them."
"Clinical information would include such things as the patient's age, whether he or she survived the illness, how long the illness lasted, and what part of the body a specimen was taken from", she said.
"All of this information is very useful when you're trying to understand the evolution of the virus," Cox said, adding that data would be stripped of personal identifiers.
"Public genetic databases aren't necessarily set up to accommodate additional information beyond the bare sequence data, and some work will be required to remedy that, Cox said. For example, a database should have fields for such information as whether the virus came directly from a clinical specimen or from an isolate obtained by amplifying the original specimen", she explained.
"All of these details are potentially very important because they can have an impact on the sequence itself," she said.
Experts in animal and human virology, epidemiology, bioinformatics, and intellectual property issues will be included in the GISAID, according to the Nature letter.
"A concern of developing countries battling the H5N1 virus is that they won't benefit from releasing data derived from samples they collect, because any resulting drugs or vaccines will be too expensive". "Because of this", Cox said, "there really is going to be a lot of effort put into the intellectual property rights issue to assure proper acknowledgment of the origin of the sequences and recognize the scientists and the public health workers in the country of origin of the virus."
"A group within the consortium will focus on intellectual property issues", Cox said. They will work to credit the scientists who are on the front lines in affected countries and also "to determine if there are ways the consortium could help facilitate benefits for those countries that are hardest hit by avian flu."
"The equity issue has been discussed a lot", she added. "We don't have the solutions yet, but it's an area that needs to be tackled."
According to Cox, scientists working for pharmaceutical companies could participate in the consortium. "Pharmaceutical manufacturers would be able to look at the data, and, for example, if they 're trying to design new antiviral drugs for H5N1 or other flu viruses, they'd be able to use the data to do that," she said.
The director of GISAID is Peter Bogner, chief executive of the Bogner Organization, Santa Monica, Calif. He is one of the authors of the Nature letter, with Cox; Capua, who chairs the scientific committee of the joint avian flu expert panel of the World Organization for Animal Health (OIE) and the United Nations Food and Agriculture Organization; and David J. Lipman, director of the US National Center for Biotechnology Information.
Capua started a kind of a revolt against the hoarding of bird flu virus data last March, when she put her own H5N1 sequence data into GenBank instead of in the protected database used by WHO-linked labs, and challenged others to do the same according to the Nature news article.
According to the article Capua then teamed up with Bogner, who talked with many scientists and policymakers about the issue. Subsequently, the OIE-FAO avian flu expert panel (OFFLU) endorsed the consortium idea.
Researchers and health officials from countries around the world, including those hard-hit by H5N1 avian flu, such as Thailand, Indonesia, Vietnam, China, Cambodia, Egypt, and Turkey, as well as countries not yet affected comprise the 70 signers of the letter.
Cox said the consortium is "really at a very formative stage right now. There's a lot of groundswell of support for it. There's a lot of enthusiasm, but it's just the beginning."