WHO behaving badly (again)

An article in The Straits Times from newswire Associated Press (AP) drew my attention to a festering disagreement between proponents of an innovative global sharing initiative for influenza information and the World Health Organization, the official UN Agency that has run the global influenza surveillance system for more than a half century. The new system, The Global Initiative on Sharing Avian Influenza Data (GISAID), began midway through 2006 and has made rapid progress. It came into being to deal with dissatisfaction with the existing system wherein WHO allowed influenza gene sequence information to be deposited in a restricted access database at Los Alamos National Laboratory (LANL). This was an improvement over the conventional practices of many leading flu scientists who kept their sequence information secret and private until they published it. This locked up potentially important information longer than necessary and if there was no plans to publish, perhaps indefinitely. The LANL database was a sharing effort by 15 leading flu labs but didn't go outside that group. In 2006, Italian scientist Ilaria Capua complained in an open letter in Nature. It was co-signed by 70 other scientists. It called for greater transparency and prompt sharing of important information in the face of a possible pandemic. It was widely praised and many scientists now routinely use the GISAID system that resulted. But not all, and the article in the Straits Times suggests that GISAID is frustrated by WHO's failure to support the effort:

It's a David and Goliath battle that could affect the world's ability to monitor diseases and develop lifesaving vaccines.
The key issue: Should Indonesia and other developing nations have a say over crucial genetic data about their own deadly viruses?

An international network of top influenza scientists says yes, arguing that is the best way to speed development and research, but they are running into resistance from within the World Health Organisation (WHO), which opposes letting countries keep intellectual property rights to virus samples they provide for research.

The intensifying standoff was triggered in part by revelations that the WHO, for years looked upon as the protector of the poor, had been keeping coveted information about bird flu and other viruses in a private database in Los Alamos, New Mexico, and making it available to just 15 laboratories.

Some foreign governments called for a boycott of the global body's 55-year-old virus-sharing system, which had obliged them to freely hand over samples and data. (AP, via Straits Times)

The AP piece suggests what may be the source of a significant disagreement between WHO and GISAID: the approach to intellectual property (IP) rights, meaning patents and licensing. The WHO system does not recognize any right to patent flu viruses or sequences. GISAID is more flexible on this issue. I am philosophically in line with WHO on this and we have covered it often here (among these links). But the GISAID system also seems to have something to recommend it, not least of which is that it seems to be working to get sequence and other information from developing countries that refuse to provide it to the WHO system on the grounds that WHO allows pharmaceutical companies to use the information to make proprietary products from isolates and information obtained from developing countries that those countries could subsequently not afford.

Our common understanding is that scientific progress will be most rapid and innovative if data are available readily to all investigators in the communities providing influenza research, delivery of diagnosis, treatment and prevention tools in a way that preserves access to and benefit from their professional investments, intellectual contributions, and capability to use technology derived from them for research and delivery of products for the public good.

GISAID approaches the need to support greater certainty of access to influenza-fighting technology by an agreement to protect the capability of all participants to use it in the global fight against influenza. All participants in GISAID, accordingly, agree to respect proprietary rights but voluntarily set them aside for others who have agreed to share in the same way. We view this equitable sharing as an important safeguard for global public health. (GISAID, my emphasis)

I read this as a "share and share alike" principle. Anyone part of the GISAID system has immediate access to the information deposited therein. The requirement for access is that you abide by the share and share alike principle. I am interpreting this to mean that if a scientist is outside the system, his or her sequences can be used to make a proprietary product (e.g., a vaccine) and sell it to anyone else, subject to usual IP law at the time or at least can make claims that might be expensive to controvert. A scientist inside the GISAID system can only do this with countries or parties outside the system. With other GISAID agreeing parties, any proprietary or IP rights will be voluntarily set aside. The word "voluntarily" means that a GISAID member could violate this agreement legally, but it would likely be costly in terms of reputation and cooperation with any IP claims that are made. It sounds like a good compromise plan to me.

According to the AP, however, WHO is in no mood to compromise:

However, the WHO appears to be going to extreme lengths to stand in GISAID's way, including withholding funding that has been pledged for the database.

The World Health Organisation, meanwhile, is seeking US$10 million (S$14.4 million) for its own database and virus tracking system, even though its own scientists are already using GISAID's free-of-charge site almost exclusively, including for last month's virus strain selection for the annual flu shot, said Director of WHO's collaborating centre at Japan's National Institute of Infectious Diseases, Masato Tashiro.

Because many scientists played a key role in helping design the system to meet their needs, they are befuddled at the WHO Secretariat's refusal to embrace them.

The global body's top flu official David Heymann, said the reason was simple.

For the first time in decades, developing countries are looking at the global body with mistrust, and officials cannot afford to be partial to any group, he said, adding this was a direct order from WHO Director-General Margaret Chan.

Dr Heymann supports keeping viruses in the public domain - something that effectively strips countries of ownership rights - and, until recently, other top officials in Geneva maintained it was important some genetic data remained behind closed doors.

In the most recent dispute over GISAID's free database, the WHO has refused to hand over US$450,000 provided by the US Centres of Disease Control for the database's development well over a year ago. (AP)

This seems like a petty and unpragmatic position on WHO's part. Perhaps the real reason is that they want to keep control of the global surveillance system and not lose it to GISAID. Maybe they are succumbing to pressure from drug companies and flu scientist brahmins who now have control of valuable sequence information and don't want to lose it.

Whatever the reason, the net result is further erosion of WHO's stature and authority. Sometimes institutions are like that. They pursue policies, "on principle," that are like committing suicide.