Showing posts with label data hoarding. Show all posts
Showing posts with label data hoarding. Show all posts

13 February 2007

Novartis Does Open Genomics

It's happening, slowly:

Novartis, the Basel, Switzerland, drug giant, has helped uncover which of the 20,000 genes identified by the Human Genome Project are likely to be associated with diabetes. But rather than hoard this information, as drug firms have traditionally done, it is making it available for free on the World Wide Web.

"It will take the entire world to interpret these data," says Novartis research head Mark Fishman. "We figure we will benefit more by having a lot of companies look at these data than by holding it secret."

The data and more information is available from the Diabetics Genetics Initiative site at the Broad Institute. (Via Slashdot.)

14 March 2006

Will Data Hoarding Cost 150 Million Lives?

The only thing separating mankind from a pandemic that could kill 150 million people are a few changes in the RNA of the H5N1 avian 'flu virus. Those changes would make it easier for the virus to infect and pass between humans, rather than birds. Research into the causes of the high death-rate among those infected by the Spanish 'flu - which killed between 50 and 100 million people in 1918 and 1919, even though the world population was far lower then than now - shows that it was similar changes in a virus otherwise harmless to humans that made the Spanish 'flu so lethal.

The good news is that with modern sequencing technologies it is possible to track those changes as they happen, and to use this information to start preparing vaccines that are most likely to be effective against any eventual pandemic virus. As one recent paper on the subject put it:

monitoring of the sequences of viruses isolated in instances of bird-to-human transmission for genetic changes in key regions may enable us to track viruses years before they develop the capacity to replicate with high efficiency in humans.

The bad news is that most of those vital sequences are being kept hidden away by the various national laboratories that produce them. As a result, thousands of scientists outside those organisations do not have the full picture of how the H5N1 virus is evolving, medical communities cannot plan properly for a pandemic, and drug companies are hamstrung in their efforts to develop effective vaccines.

The apparent reason for the hoarding - because some scientists want to be able to publish their results in slow-moving printed journals first so as to be sure that they are accorded full credit by their peers - beggars belief against a background of growing pandemic peril. Open access to data never looked more imperative.

Although the calls to release this vital data are gradually becoming more insistent, they still seem to be falling on deaf ears. One scientist who has been pointing out longer than most the folly of the current situation is the respected researcher Harry Niman. He has had a distinguised career in the field of viral genomics, and is the founder of the company Recombinomics.

The news section of this site has long been the best place to find out about the latest developments in the field of avian 'flu. This is for three reasons: Niman's deep knowledge of the subject, his meticulous scouring of otherwise-neglected sources to find out the real story behind the news, and - perhaps just as important - his refusal meekly to tow the line that everything is under control. For example, he has emphasised that the increasing number of infection clusters indicates that human-to-human transmission is now happening routinely, in flat contradiction to the official analysis of the situation.

More recently, he has pointed out that the US decision to base its vaccine on a strain of avian 'flu found in Indonesia is likely to be a waste of time, since the most probable pandemic candidate has evolved away from this.

The US Government's choice is particularly worrying because human cases of avian 'flu in North America may be imminent. In another of Niman's characteristically forthright analyses, he suggests that there is strong evidence that H5N1 is already present in North America:

Recombinomics is issuing a warning based on the identification of American sequences in the Qinghai strain of H5N1 isolated in Astrakhan, Russia. The presence of the America sequences in recent isolates in Astrakhan indicates H5N1 has already migrated to North America. The levels of H5N1 in indigenous species will be supplemented by new sequences migrating into North America in the upcoming months.

Niman arrived at this conclusion by tracking the genomic changes in the virus as it travelled around the globe with migrating birds, using some of the few viral sequences that have been released.

Let's hope for the sake of everyone that WHO and the other relevant organisations see the light and start making all the genomic data available. This would allow Niman and his many able colleagues to monitor even the tiniest changes, so that the world can be alerted at the earliest possible moment to the start of a pandemic that may be closer than many think.

Update: In an editorial, Nature is now calling for open access to all this genomic data. Unfortunately, the editorial is not open access....