Declan Butler, reporter

June 29, 2006

The time for sitting on flu data is over.

Filed under: avian influenza,Uncategorized — admin @ 9:12 pm

Nature has a short but strong editorial today on the problem issue of access to flu data, which I’ve already blogged about here and here. It follows up on our much longer March editorial on the issue — Dreams of Flu Data.

Here are a few excepts, from today’s:

Indonesia has become the hot spot of avian flu, with the virus spreading quickly in animal populations, and human cases occurring more often there than elsewhere. Yet from 51 reported human cases so far — 39 of them fatal — the genetic sequence of only one flu virus strain has been deposited in GenBank, the publicly accessible database for such information.

Yet scientists outside the WHO networks have no access to these data. The problem last year spurred the US National Institutes of Health (NIH) to create a consortium to sequence and make public thousands of flu strains from humans and birds. Very quickly, this more open approach led to the useful discovery that viruses swap genes with each other more frequently than had been previously thought.

Some political leaders are drawing the appropriate conclusions. Dennis Kucinich (Democrat, Ohio) and Wayne Gilchrest (Republican, Maryland) are circulating a letter in the House of Representatives that calls on Michael Levitt, the US health secretary, to require H5N1 sequences and other publicly funded research data “to be promptly deposited in a publicly accessible database, such as GenBank”.

To see a pdf copy of the Kucinich/Gilchrest letter click here.

The issue remains topical. Nature has clearly stated, for example, that:

“Genetic data are also lacking. When samples are sequenced, the results are usually either restricted by governments or kept private to an old-boy network of researchers linked to the WHO, the US Centers for Disease Control and Prevention, and the FAO. This is a far cry from the Human Genome Project, in which all the data were placed in the public domain 24 hours after sequencing. Many scientists and organizations are also hoarding sequence data, often for years, so they can be the first to publish in academic journals. With the world facing a possible pandemic, such practices are wholly unacceptable. Nature and its associated journals are not alone in supporting the rapid prior exposure of data when there are acute public-health necessities.”

But in today’s Le Monde, Jean-Claude Manuguerra, a virologist at the Institut Pasteur in Paris, who is involved in national pandemic planning, comes out with these old chestnuts to defend retention of data:

Here’s the relevant part in French;

Q: Partagez-vous les critiques des virologues qui dénoncent l’absence de transparence au sujet des souches virales retrouvées chez les personnes infectées ?

A: “C’est un problème complexe. Les analyses de ces souches sont effectuées soit par les quatre centres de référence (Atlanta, Londres, Tokyo et Melbourne), soit dans un ou plusieurs des 15 laboratoires dits “H5″, depuis peu réunis en réseau par l’OMS. Pour l’heure, il est vrai que les séquences génétiques des virus H5N1 isolés chez l’homme ne sont pas rendues publiques avant leur publication scientifique. Elles sont toutefois partagées au sein du réseau des laboratoires de référence et du réseau “H5″. Certains, comme ma collègue italienne Ilaria Capua du laboratoire de Padoue, dénoncent avec force et de manière courageuse un tel système. Ils réclament, pour des raisons sanitaires, un partage généralisé des connaissances. Il faut savoir que, paradoxalement, si ces informations devaient, d’emblée, être partagées par la communauté scientifique, nous rencontrerions beaucoup de difficultés à collaborer. Ces informations ne peuvent en effet faire l’objet de publications dans des revues scientifiques prestigieuses que si elles n’ont pas été rendues publiques auparavant. Or ces publications sont le critère essentiel assurant le financement des futures recherches. Par conséquent, si une transparence totale était imposée, les chercheurs seraient tentés de moins partager leurs connaissances qu’aujourd’hui. La situation actuelle est, d’une certaine manière, un moindre mal. “

A translation of the key paragraph:

“You have to know that, paradoxically, if these data were shared from the outset by the scientific community, we would encounter many difficulties in collaborating. These data can’t be published in prestigious scientific journals if they have been made public before. Whereas these publications are the essential criteria assuring the financing of future research.”

Perhaps Jean-Claude Manuguerra should read more often the editorials of the “prestigious scientific journals,” where much less than being a hindrance to the dissemination of data on H5N1 we have led in championing its immediate release into the public domain, decrying as “wholly unacceptable” that “many scientists and organizations are also hoarding sequence data, often for years, so they can be the first to publish in academic journals.”

His comments in Le Monde are ill-researched; had he consulted the “Dreams of Flu Data” editorial, he could rest assured that: “Nature and its associated journals are not alone in supporting the rapid prior exposure of data when there are acute public-health necessities.”

In any case, the battle over access to gene sequences and clinical data on human H5N1 is one that I feel is now won in advance.

With respect to animal sequences, the Paris-based World Organisation for Animal Health (OIE) and the United Nations Food and Agriculture Organization (FAO) this month conceded to pressure and said that they would work with the NIH to sequence H5N1 samples from birds and deposit them in GenBank.

The World Health Organization (WHO), and its member states, are likewise acutely aware that the political pressure is now on for immediate access to human sequence and clinical data on H5N1 cases. There are legitimate issues to be worked out, such as ensuring that the researchers who do the sequencing, and the countries from which the samples are derived, get credit. But these are soluble, through various permutations, for example, of the Creative Commons licences, and other legal safeguards, that allow immediate sharing, while protecting the interests of the producer of the data.

But the WHO knows very well that that the diplomatic imperatives that maintained the pre-SARs lack of transparency are no longer an option, and I think we will see leadership from it in the near future, perhaps before the end of summer.

No Comments

No comments yet.

RSS feed for comments on this post.

Sorry, the comment form is closed at this time.

Powered by WordPress