Effect Measure

Last week WHO’s flu maven, Keiji Fukuda, said what we and others have been saying for a long time. Flu scientists need to change their research ethics. The world of flu virology has developed a mandarinate that is impeding progress for its own benefit. And their bad behavior is enabled and imitated by some public health agencies, like CDC. Researchers and CDC are sitting on H5N1 genetic and other flu sequences of public health importance. They treat their data as proprietary, to be used for their own benefit in scientific publications.

This isn’t unusual. It is the normal way of doing academic science. But when it comes to research on one of the major global public health problems this is no longer acceptable. And WHO is saying so, gently but clearly:

Current international research is highly competitive and the results of studies are often held back pending publication, which could delay their usefulness in a public health emergency, WHO officials said.

Keiji Fukuda, coordinator of WHO’s global influenza programme, said that more sharing of research was required, as happened informally between experts during the deadly SARS epidemic in 2003 which spread from southern China to Canada.

“In developing a WHO public health research agenda (on influenza) we are trying to push for a paradigm change,” Fukuda told the final session of a four-day WHO meeting on bird flu.

“What we hope to improve is the kind of sharing and flow of information and take it to another level,” he said. (Reuters)

I’m an epidemiologist and the data I collect is obtained through hard work and a lot of money and a lot of time. Once I have collected it there is a tendency to think it’s “mine” by virtue of the sweat equity I’ve put into it. I understand the thinking and am more than normally sympathetic to it. Why should others be able to scarf up the benefits of my hard work? But I’ve come around to the idea the data aren’t mine — it is paid for by taxpayers — and it should be accessible to other scientists. Yes, I’d like a first crack at it, but I’ll have it before anyone else and will know it best so I automatically have an advantage. If I’m not quick enough in using it, then others get a chance.

But I’m not a flu scientist, so my data is not usually that urgent. Research on pandemic influenza is a matter of urgency and timeliness and their aren’t nearly enough hands working on it. If the sequences are made available then many more scientists can be mining the data, not just the ones connected to the big labs.

The paradigm shift required is one of ethics, not science. Fukuda suggests that one way to force this more ethical behavior is for research support to be tied to a requirement for disclosure. That’s a good idea. But there are other ways, too. We have previously suggested that no manuscript on pandemic influenza should be accepted for publication unless the genetic information it references is already in a publicly accessible data base, like GenBank, at the time of submission. If it isn’t, then the manuscript will no longer be considered further for publication.

Some of the biggest names in the world of flu science have been warning us of the extraordinary threat we could face. What they say makes a great deal of sense to many of us. But if the threat is extraordinary then the reaction to it should be, too. Instead flu scientists still operate under the old rules. Not good enough. Speaking as a public health scientist myself, I consider it also unprofessional and unethical. CDC and all you flu scientists: release all your sequences now.

It’s time for New Rules.

Comments

  1. #1 PalMD
    May 15, 2008

    Well said!

  2. #2 RobT
    May 15, 2008

    http://hosted.ap.org/dynamic/stories/A/AS_GEN_BIRD_FLU_NEW_DATABASE_ASOL-?SITE=AP&SECTION=HOME&TEMPLATE=DEFAULT&CTIME=2008-05-15-13-17-45

    Not sure what this new open access databank will offer compared to Genbank. Comments Revere?

  3. #3 gilmoreaz
    May 15, 2008

    Their Homepage

    Global Initiative on Sharing Avian Influenza Data

    http://www.gisaid.org/

  4. #4 anon
    May 16, 2008

    http://www.singtomeohmuse.com/viewtopic.php?t=2545

    you could be a model by collaborating with the
    forums.
    Merge this blog and the flu-forums !
    WHO could attach a forum to their webpage
    and encourage researchers to participate discussion

  5. #5 Robyn
    May 16, 2008

    Thank you for this!

  6. #6 anon
    May 18, 2008

    wondering why Fukuda has no webpage,blog,forum
    but communicates via conferences.

    secrecy ?

  7. #7 Owinurame
    May 18, 2008

    Right on, Revere.
    I’d like to see more conversation about other types of data kept behind bars by public health officials who have forgotten the meaning of surveillance – getting information into action.
    The Global Equity Gauge Alliance < http://www.gega.org.za/> points out that in order to begin using public health data to achieve social equity we must overcome the “first injury:”
    ‘Communities denied access to their own vital statistics.’

Current ye@r *