Declan Butler, senior correspondent at Nature, has a particularly infuriating news article today, infuriating because of the attitude it reveals from WHO, CDC and the Indonesian government about releasing information about influenza they alone are privy to. The main points of the article revealing more details of the genetic sequences of the large Indonesian cluster of eight related people in Karo, Sumatra in Indonesia have been known for at least a month, although never publicly released before Butler's article. Presumably he obtained the information from the same sources we and others did. They have been discussed here and elsewhere at various times, but they are definitely leaked data in the sense that they were not meant to be made public. They were obtained legitimately and carried no notice of confidentiality, so the only dishonesty here is the intellectual dishonesty of the possessors of these data who have hoarded it. More about that shortly. First the data.
Virus isolates from six of the eight family members have been sequenced, but the WHO has not released the data, saying that they belong to Indonesia. Instead, the agency released a statement on 23 May stating that there was "no evidence of genetic reassortment with human or pig influenza viruses and no evidence of significant mutations".Nature has now obtained more detail on the genetic changes, which suggest that although the WHO statement was not incorrect, plenty more could have been said. Viruses from five of the cases had between one and four mutations each compared with the sequence shared by most of the strains. In the case of the father who is thought to have caught the virus from his son -- a second-generation spread -- there were twenty-one mutations across seven of the eight flu genes. This suggests that the virus was evolving rapidly as it spread from person to person.
One of the mutations confers resistance to the antiviral drug amantadine, a fact not mentioned in the WHO statement. The data were presented by Malik Pereis, a virologist at the University of Hong Kong, at a closed meeting of around a dozen international experts in animal and human health, held in Jakarta, Indonesia, in late June. (Declan Butler in Nature; subscription site, alas)
As far as we know (and I am not particularly confident this is very far at all), no one outside this family was infected. Butler interviewed virologists not part of the Jakarta meeting where these data were presented in May who said what we said here: we don't understand the relationship of the genetics to the biology well enough to know when a mutation is significant or not. the many mutations in the virus isolated from the father was surprising to some, even raising the possibility he might have been isolated from another source, although this seems unlikely.
Here's are the money quotes from the article, however:
Part of the reason the picture is so unclear, say virologists contacted by Nature, is that the continued withholding of genetic data is hampering study of the virus. None of the sequence data from the Indonesian cluster has been deposited in public databases -- access is restricted to a small network of researchers linked to the WHO and the US Centers for Disease Control and Prevention in Atlanta, Georgia.
[Elodie Ghedin, a genome scientist at the University of Pittsburgh School of Medicine in Pennsylvania], for example, works on how mutations in one area of a genome can predispose other areas to further changes. She is part of a project started in 2004 to sequence thousands of human and bird-flu strains, but she has little access to H5N1 virus from humans. "Flu researchers don't all look at the data from the same angle," she says. "The more diverse analyses that are performed, the better we will understand the evolution of this virus."
"If all of the H5N1 isolates were available, there'd be quite a few people focused on understanding these data," agrees David Lipman, director of the US National Center for Biotechnology Information in Bethesda, Maryland.
But Paul Gully, who joined the WHO two months ago as senior adviser to Margaret Chan, head of the agency's pandemic-flu efforts, defends the agency's position. He points out that the WHO's priority is investigating outbreaks, not academic research. And he adds that although calls for more complete genome data and wider sharing of samples are "a valid point", labs are stretched during outbreaks, and don't have the time or resources to do high-quality sequencing.
He agrees that sharing samples with other researchers would allow such work to be done. But he says the WHO must work within the constraints set by its member states -- they own the data, and decide whether to share it. "As more countries share data, hopefully that research will get done," he says.
The WHO has not formally asked Indonesia to share the sequences, Gully adds. "We would rather wait and see what Indonesia decides."
You can't get any clearer than this. WHO would rather wait and see what Indonesia decides. But Indonesia has already stated it will seriously consider such a request, so this is complete and total bullshit from WHO. They should be ashamed of themselves. Instead my guess is they will take it out on Declan Butler for revealing their dirty little secret and he'll become persona non grata at WHO like he has become at CDC for revealing they aren't sharing their sequences either (as I've been told by multiple sources).
I don't think anyone who reads this blog regularly could say I haven't given WHO the benefit of the doubt. I know there are those at WHO that want to do the right thing. At the moment, however, WHO is not doing the right thing. Their behavior is outrageous and makes their excuses for participating in the "Gang of Fifteen" closed database at Las Alamos not only suspect but not even believable.
WHO has nothing to offer but their credibility as a source of information. When they withhold information and essentially lie about it by not telling the whole truth, their credibility goes down the toilet. Many commenters here wrote WHO off long ago. For reasons I still believe to be true I think that was a mistake. But now I am joining their camp until such time as they regain the trust of the many knowledgeable and interested community looking on in horror at their behavior.
Trust is much easier to lose than to regain. WHO has its work cut out for itself in that category.
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Knowledge is Power
Francis Bacon
what can it hurt, if we found another organisation
which does sequencing and patient interviews
independently or even in competition to WHO ?
Can you explain the reason for your outrage? It seems to me that you feel that WHO has been negligent in failing to request that Indonesia share the data. Why does there need to be a formal request? Surely Indonesia has a moral duty to share the data with or without a request.
I'm not a diplomat, but it looks to me as though the Indonesians have implicitly (or explicitly, but privately) refused to share the data. WHO depends on the cooperation of a lot of irascible third-world governments and it doesn't want to provoke a diplomatic incident by making a formal request which has been denied. So WHO doesn't ask, and Indonesia doesn't refuse, and we can all pretend that the lack of cooperation is due to some bureaucratic formalities that have to be straightened out.
anon: you need to have the isolates, the facilities and the resources to do it.
Joe: This is part of a longstanding pattern. WHO has been complicit in the closed LANL database and their failure to even ask the gov't of Indon to release the sequence info suggests it is probably not Indon but the scientists who are the stumbling block. In any event, WHO has failed to show leadership and have done great harm (whether it is irreparable or not we will have to see) by squandering their most precious resource, credibility. We depend on them for information and they cannot provide it if they act in ways that they are not trusted. And trust is slipping away quickly.
I've been trying to find recent statistics of malaria morbidity and mortality. I hope we aren't gonna see a sharp rise in alaria mortality in the coming months...:/
A pandemic is looming and those responsible for witholding important data that may help prevent it, will not be judged kindly by history.
The paper by Declan Butler points out that this virus is mutating. The father with the most mutations was lost from the hospital. He returned to his community where he was exposed to other viruses and exposed the mutated ? reassorted virus to many others in his community. He was only found just before he died. This is not acceptable containment. We were lucky it was not a pandemic mutation. We can all clearly see now, how lucky we were.
I lived and worked in Indonesia for 8 years and I know people are scared to talk because they fear that they will not be able to continue their valuable work if they do, but there must come a time when it should be acknowledged that things are not working and change is required.
Investigations in Indonesia have been suboptimal. With more then 50 confirmed human H5N1 cases, the investigators have yet been able to match the human H5N1 virus to an avian H5N1 case around the same time from the same area, despite their assertions that the cases are coming from sick birds.
Control measures against avian H5N1 have been ineffective in Indonesia as evidenced by ongoing human cases and clusters. No autopsies on human H5N1 cases have been performed. Research by internationally funded competent investigators is obstructed. Diagnosis of human cases is delayed and the highest mortality rate from H5N1 is found in Indonesia.
Data such as the cat isolate which has been the closest match to human H5N1 cases in Java was only officially released by WHO, 4 months after being informed about it. This fact should not be ignored. International authorities should not collude with Indonesian authorities and hide data. (Hiding data is not acceptable. Indonesia hid the evidence of bird flu from August 2003 to late January 2004 and were rightly chastised.)
Soon Indonesia will have the most human deaths in the world from H5N1. Things are not going well and need to be changed. I can understand delaying data release in some circumstances. But I am concerned if data is not released to hide the incompetence and ignorance and protect people who are not doing an adequate job.
I am no longer in Indonesia but I still fear for their people and everyone else in the world. I would hope that action is taken to improve the situation in Indonesia.
Secrecy combined with incompetence is a dangerous situation for all of us.
Joe in Australia wrote: "So WHO doesn't ask, and Indonesia doesn't refuse, and we can all pretend that the lack of cooperation is due to some bureaucratic formalities that have to be straightened out."
Joe, I think you answered your own question about why Revere is outraged. The gutless lack of leadership on the part of WHO is mind-boggling.
Revere.
In the past you discussed the 'Imposter Syndrome'.
Is there a term or syndrome for the reverse?
"Trust", not "Just". Last line of the post.
Tom: They are called Imposters.
GZH: Thanks.
This is unbelievable. In late May and early June I had people at WHO and the CDC tell me that there "were no significant mutations" in the Tanah Karo viruses.
While the PR people probably did not know, they based their statements to the media on what their scientists told them. Now, it seems that those scientists certainly knew most or all of the story.
That's just disgusting. They put their spokespeople in the position of lying to everyone and duped the public and other scientists into believing that nothing major was different with the virus.
How can we trust them again until they prove they are worthy of trust?
Further (given Rever's comments about Declan Butler), how is the public going to continue to obtain information, if they blacklist reporters who disagree with them? At the rate things are moving, there'll be no one left to talk to. Not that anyone would believe them anymore anyway.
-- Lenn
Petition to release H5N1 sequences:
http://www.petitiononline.com/h5n12006/petition.html
I guess the best way would be to watch the mortality rates of other infections in these problem countries. Probably its easier to say "malaria death rates rise" or "other infections death rates rise" than lose face saying "we didn't tell the world that we are sick with the bird plague and didn't do anything to prevent it".
But where can you find e.g. malaria rates. Are there such? I didn't find on the WHO site or with Google.
I don't understand what rhetoric and hyperbole will achieve. Niman, you (Reveres) and others have been pouting about WHO and other insitutions for years(!) on this issue now and what's changed. Some sequences get leaked, some released and another flu season is upon us yet again. Do you all expect that professional disdain will move the selfish to change?
Surely there must be litigial or other ways to accelerate the release of data.
Jimmy: We haven't been pouting about WHO. We have been defending them. We are now fed up. Yes, I think professional disdain will help, but even it if doesn't it still needs to be said.
No, you can't sue them. Think about it.
If Int'l orgs. are to be effective, they must be invested with some power, and wield the power they have - not too difficult to justify when it is so clearly for the good of all, as in this case. Failure will not spell dishonor but point the finger elsewhere. (Diplomacy can be kind and smooth edges ..)
So what gives? It smells cover-up, in their interests. I don't understand the science well enough to speculate.
Sick cats and parrots look ashamed and close down. They know their sick status invalidates them as functioning, effective social partners. Human imposters cover up their failings as best they can. Spunky cancer patients pretend cheer, for themselves and their family. This is natural. It is trying to make the best of a bad deal. When one adds in consequent economic stakes - negating the negative may become an overriding consideration. Is that all that is going on here? I can't judge, but it is very worrisome.
"Surely there must be litigial or other ways to accelerate the release of data."
Other ways? Do you mean like hacking/cracking the data bases? ;)
If the WHO asked publicly Indonesian government to release the sequences and the Indos refused, what would be the diplomacy situation? WHO would have lost it's face as an int'l organizartion of any int'l power. So they don't wan't to take publicly the risk of Indonesians refusing if the WHO people asked.
Probably they have asked and told Indos to release the data behind the political curtains many times.
Thinlina: If I had to guess (and I have to since I have no information about this) I would say this is a scientist problem, not a gov't of Indon problem. But it's just a guess.
I feel your anguish about this Revere. Bit of a disappointment that the WHO has failed their mission and failed the many good people that work there trying to accomplish that mission. Common enough syndrome these days. Welcome to the common perspective.
A possible upside to an eventual pandemic (maybe flu, maybe something else...) is the probable deposition of the rascals responsible for the lack of amelioration of our plight. Seems a high price for the rest of us but that's the way these situations are usually resolved. However, there's always a few rascals left to seed the next folly according to the Law of Nonuniform Dispersal: When it hits the fan it rarely gets on everyone equally.
The behaviour as described represents a betrayal of the public trust and professional ethics on the part of WHO, along with the Indonesian government, the CDC and the "old boys' club" of scientists who are part of this. This is not the only example either (e.g. previous denials of H2H and continued emphasis on B2H in Indonesia despite growing evidence to the contrary as noted above.) The question is "Why?" Are they all colluding to cover up incompetence? To further a few careers? To avoid alarming the public? No single reason makes sense on its own, so perhaps a mix of all three?
None of these excuses validates their actions, which are endangering public health--possibly in a catastrophic way--and it should be made very clear that they will all be publicly held to account for the consequences. The efforts of Declan, Revere, Nature, etc are a good start in terms of putting them on notice.
Does anybody know anything about what is happening with the appointment of the next Director-General?
I distinctly remember that when the current acting DG Anders Nordstrom started on the job, there was a brief period when official statements became a shade nearer to reality. Now that trend seems to have disappeared.
I don't know exactly how these things work, but generally every appointment of significance to an UN agency is fought over by various countries quite vigorously, often with very little relevance to what that agency actually does. I'm sure policies in relation to a pandemic or even continuing avian outbreaks would have such serious implications to countries, businesses, politicians, in fact, anyone with any stakes in power on a global or international level, that this appointment will be one of the most bitterly fought over behind closed doors.
I have a suspicion that we won't see any changes nor responses until this battle is settled. And I'm not optimistic that things will change for the better after that, for the simple reason that as a pandemic becomes more likely, the stakes become higher, and the obstacles to openness therefore will grow and not lessen.
I think we should continue to advocate and put pressure on the WHO, but we should also invest substantially in all the other ways of pandemic mitigation that does NOT depend on such openness.
Joe in Australia wrote: "So WHO doesn't ask, and Indonesia doesn't refuse, and we can all pretend that the lack of cooperation is due to some bureaucratic formalities that have to be straightened out."
Yep. I'm afraid this may be standard procedure. :-(
Argh! All this talk and no one still hasn't hacked the databases?! Are we this lousy computer nerds?! I really can not praise the scientific community for using modern techniques...:/
;)
Thinlina and others: I would note that the Los Alamos National Laboratory is a national defense laboratory and cracking its computer facility is likely a federal offense. I, personally, do not see this as the solution to the problem. This is an ethical issue that needs solving at another level. There are too many computers and too many ways to secure this information to make this a practical or useful strategy. No do I think the gain in this case is worth the risk. I know others don't share this opinion but I wanted to make my own position clear.
I understand your position and in no case (I repeat, in no case!) I ask any one to crack or hack Los Alamos or anything else! It's criminal and unfair to make anybody share that kind of information! We should on the contrary give our money to Bush admin or other wise people who could use it in better ways - like to some expensive bourbon at Hooters' or other ways that make the world a better place to live...
Well, anyways, don't ever, ever hack Los Alamos and what's the most important, don't ever never share the kind of information that could compromize the national benefit of the nation!
This article from Science magazine a few months ago seems to support Revere's contention that the sequence data sharing problem is likely more due to scientists than governments:
http://www.sciencemag.org/cgi/content/full/311/5765/1224
Thinllina: Assuming you are being sarcastic, let me make my position clearer. I do not think this is question of endangering national security. On the contrary, it is my opinion that release of this information makes us more, not less secure. But not much. I am pointing out that the risk to an American citizen of violating a US federal law is highly unlikely to be matched by a sufficient benefit. Whatever sequences are in the LANL database they aren't going to make a life or death difference IMO (I believe this for a variety of technical reasons) and there are many more sequences elsewhere that will be driven further underground or made even more secure. This is an ethical issue for all scientists, not just the ones depositing in the LANL database, although they are certainly ethically challenged first and foremost. This is a matter of principle more than one of substance in my view.
You are right :)
Ethically challenged is a really good expression of the situation ;D
And yes, I was trying to be sarcastic with a kind of bad english...
Those who hack fall into two categories: security experts doing penetration testing of networks and geeks looking to show off on the hacking forums. The latter group is unlikely to read this blog and go looking for info like this or even know what it was if they stumbled across it, although maybe one of these wastefully gifted idiots will prove me wrong.
The former group, who are more likely to read this blog, aren't going to risk their (usually lucrative) career or liberty. They are usually aware of the consequences and the likelihood of being caught. Revere, it's not just US nationals who get strung up for it. The UK currently has a gifted nerd who is due to be extradited for hacking a US military database supposedly looking for UFO info, and may be detained in Guantanamo Bay and looking at up to 40 years in jail. I'm more concerned that he managed to do it. Kinda makes a nonsense of taking your shoes off at the airport.
Getting back to the point, what difference will releasing the sequences make to anyone but the scientists who make a living analysing it and us info vultures who have a morbid curiosity about what they'll come up with? In that respect I feel like we are an intellectual version of the gutter press. Will knowing allow humankind to halt or diminish the spread if it blows? What am I missing?
I guess we all pay taxes Joe, right? So we are paying taxes that go to our federal governments who in turn pay their budget requirements to UN who in turn funds the WHO. So we own the data. Ilaria Capua told them to stick it up their political asses when they wanted her to "join the club" for being able to withold information. There are sequences laying around and other vital information that these guys can publish or just release. Many minds acting on the problem rather than some key labs who are looking for Nobels and funding is the only thing thats going to crack this nut. In fact it may already be too late. Dr. J. has been in country for 20 plus years in Indo and the information is undeniable that they have it, they dont want to release it and its because someone might get into someone elses funding rice bowl. That means Big Pharma and in some cases our government(s) deliberately steering the information that will ensure someone reaps the benefit of a huge new vaccine market to certain individuals. Thats just flat wrong. We the people of the world own that information and the only way to turn up the heat is to start making them hear the noise. A letter was sent from both sides of the aisle last month in our Congress to the WHO and Big P. and basically they were told that they were "stretched to be able to release it." Bullshit. The sequence data is there when they make their own findings. Its a couple of letters on a page in a line. How long does it take to send a fax or email? Duh. I would hope that if the bird bug does come in an Highly Pathogenic form that it stops at each and everyone of their families houses so they can experience first hand how not to handle a pandemic.
Dizzy: I agree completely with your reasoning.
Randy: I don't know if we are legally or in any other way entitled to the sequence data. I don't care. I think the scientists and agencies involved are ethically obligated to provide it. It's as simple as that. If it turned out we didn't pay for it or the law says they can hoard it or for some reason we couldn't get at it, it wouldn't make any difference to me. They should make it public. Those are the norms of science, the requirements of public health in this particular situation and the right thing to do. Period.
The problems associated with the sequestered sequences from Indonesia are really only the tip of the iceburg. WHO is withholding sequences and information worldwide, as H5N1 continues to rapidly evolve.
The WHO comments on the sequences should leave little doubt that it is the WHO sequencers who are holding back the sequences. When the papers are published, the "controling" governemnts will suddenly see the light and "allow" the sequences to be released.
WHO showed its hand when it offered Llaria Capua membership in their club if she withheld the Nigerian sequences. There was no issue with the Nigerian government "releasing" the data and there was also no problem with neighboring Niger. After Italy released those sequences, Albert Osterhaus released more Nigerian sequences from Lagos (as in East Atlantic Flyeway)in association with the Nature paper last week.
Those sequences became public last night and they show the rapid evolution of the Qinghai strain via recombination, as it scarfs uo "new" polymorphisms from other Qinghai isolates to make new and improved genes.
The sequneces from Lagos ahare polymorphism with the released Nigerian and Niger sequences, but also share regions with Egypt, Djibouti, Czech Rebublic, Denmark, and Astrakhan,
H5N1 is evolving in real time, but WHO wants to keep the showing private. They still hold all but one of the Indonesian human sequences and Weybridge stll has close to 100 European sequences under password protection at Los Alamos.
http://www.recombinomics.com/phylo/Brown_Italy_2.html
Kudos to Declan Butler for continuing the battle. Hopefully more reporters will open their eyes to the real deal as WHO continues to hoard.
Microsoft has been sued for not sharing essential information with competing companies. Why not dragging WHO's gang of 15 to court for not sharing essential information to collegues?
I guess all countries who 'owe' the sequences have had more than enough time to publish information by their scientific researchers, doctors etc. They simply don't do it. All sequences from last year could have been published by now. In Nature, the Lancet, and go on. They haven't been published anywhere. So the publishing and embargo argument on this is fake. They are lazy and unaware scientists.
When some institute would bring this case to justice, I would be glad to make a financial contribution to get this realized. To put some really clever people on this case.
When Ilaria Capua can put human sequences on GenBank, anyone can.
Another point Revere is making every time is, this is more an ethical issue than a life-saving issue.
I doubt that, Revere.
I am optimistic when I consider creativity, devotion and geniality in science. Not that many universities and other institutions are supporting that very well in their financial policies and structures. But it definitely is among many scientists.
Maybe we need more 'live' samples of this virus in more laboratories, to see what diverse mutations do to various life forms. In vitro and in vivo. To close the gap between the genetics of the virus to the biology or how it works out, so we get to know when a mutation is significant or not. And maybe sequences don't tell enough to make conclusions. But they are significant enough to state things about a virus that is mutating, traveling through countries, humans and animals and threatening to go off like a rocket in some time ahead.
WHO is by no means alone in the cover-up game. Interestingly, two of today's ProMed alerts reveal official efforts to keep the public in the dark about serious public health risks:
1) South Korean authorities and Coca Cola hiding a poisoning/blackmail scheme, resulting in one fatality: http://tinyurl.com/gq5hp
2) Additional details now coming out re the smuggled Chinese chicken in Detroit that raise serious questions about the actions of US federal authorities: http://tinyurl.com/hmmn5
I quote:
----
"...Federal officials, who could not be reached for comment, learned of the problem in early June and alerted state officials around 22 Jun 2006, Michigan Department of Agriculture officials said.
"They said they didn't know whether any carcasses were contaminated with the virus, which has killed 129 people worldwide since 2003.
"Federal officials apparently destroyed birds seized from the warehouse 27 Jun 2006 before the meat could be tested, prompting Michigan officials to complain.
"On 5 and 6 Jul 2006, state and federal officials seized 1600 pounds of meat from the warehouse. It too was destroyed without testing, prompting requests from some state officials that all future meat seizures be tested.
(snip)
"'One of the reasons we haven't been public is because it's the USDA's investigation,' Deacon said, referring to the U.S. Department of Agriculture. 'The delicate balance of food safety is trying to let people know about threats and risks without unduly scaring them.'
(snip)
"...The Free Press learned about the search from e-mails that Deacon sent 23 Jun 2006 and Mon [10 Jul 2006] to members of the state's working group on avian flu...."
------
In other words, this is finally coming to light over a month after federal authorities learned of the problem. And if the Free Press hadn't gotten wind of it, the public might very well never have heard about this.
As for destroying all the seized poultry before anyone had a chance to test it, it looks like our Canadian homework-munching dogs have good company south of the border, as Niman might put it.
No test, no H5N1, no problem, man! It's business as usual!
tan06: We disagree on how likely knowing the sequences will be to making a difference in the short run and there is no way to tell who is right. Legally I see no basis for a suit, here. If you are a doctor and you compile data about your patients or you are aa busines and compile data about your business I don't see anyone has the standing to demand it from you. In this case we have the standing to say these are not the same kind of data as Microsoft's and the right thing to do is release it.
Name: I am still very uncomfortable with the use of the word "cover up" for the sequence issue. Hoarding or non-disclosure would seem more appropriate. I suspect, as do others, that the failure to release is related to publication and scientific competition issues, not hiding wrongdoing or some bad situation the hoarders don't want disclosed. The USDA is more like a cover-up.
Revere, who are the priviledged 15 labs who are allowed access to the data?
Lisa: I don't have the list. I'm guessing it's Peiris, St. Jude, CDC, Weybridge, Mt. Sinai among them but I don't know if any of them are on the list. I;ve met Catherine Macken who runs it but I'm sure she won't tell me as we don't know each other that well.
"Will knowing allow humankind to halt or diminish the spread if it blows? What am I missing?"
Dizzy: As I understand it, knowledge of the sequences may aid in eventual vaccine development by permitting researchers to make educated forecasts of the virus' evolution based present alterations as well as past travel history. (See also the last paragraph of Tan06' comment above.) Someone please correct me if I'm wrong. And isn't somewhat the same approach being used now in the seasonal flu vaccine with researchers trying to guess which strains are going to be the main ones for an up-coming flu season??
Unfortunately, the issue of vaccine PRODUCTION capacity is an entirely different matter.....
Ricardo: Next year's vaccines are made by isolating viruses from cases and guessing which of them will be circulating. It is surveillance. It isn't made by prediction from sequences. We don't know how to do that at this point.
The 15 labs in the WHO H5 group are largely if not exclusively from this list:
Australian Animal Health Laboratory,
Geelong, Australia
Central Veterinary Laboratory Agency-Weybridge,
Woodham Lane, New-Haw, Addlestone, Surrey KT15 3NB,
United Kingdom
Department of Disease Control,
Hokkaido University,
Graduate School of Veterinary Medicine,
N-18, W-9, Kita-ku, Sapporo City 060-0818,
Japan
Department of Microbiology,
The University of Hong Kong, Faculty of Medicine, Queen Mary Hospital,
University Pathology Building,
Hong Kong SAR, China
Department of Pathobiological Sciences and Department of Medical Microbiology and Immunology,
University of Wisconsin-Madison, Madison, WS,
USA
Harbin Veterinary Research Institute,
Influenza Branch G-16, Animal Influenza Laboratory,
Ministry of Agriculture,
427 Maduan Street, Harbin, 150001,
P.R.China
National Influenza Centre,
Erasmus Universiteit, Dr Molewaterplein 50,
P. O. Box 1738, 3000 DR Rotterdam ,
Netherlands
National Veterinary Services Laboratory,
Animal and Plant Health Inspection Service,
P.O. Box 844, 1800 Dayton Road, Ames, Iowa. 50010,
USA
OIE and National Reference Laboratory for Avian Influenza and Newcastle Disease,
Virology Department,
Istituto Zooprofilattico Sperimentale delle Venezie,
Viale dell'Università 10, 35020 Legnaro - Pedova
Italy
Southeast Poultry Research Laboratory,
US Department of Agriculture,
Agricultural Research Service,
934 College Station Road, Athens, GA 30605,
USA
WHO Collaborating Centre for Reference and Research on Influenza,
Influenza Branch, Viral Disease Division, National Centres for Infectious Diseases,
Centers for Disease Control and Prevention,
1600 Clifton Road, Mailstop G16 30333,
USA
WHO Collaborating Centre for Reference and Research on Influenza,
National Institute for Medical Research, The Ridgeway, Mill Hill, London NW7 1AA,
United Kingdom
WHO Collaborating Center for Studies on the Ecology of Influenza in Animals,
Virology Division, Department of Infectious Disease, St. Jude Children's Research Hospital, 332 North Lauderdale St., Memphis TN-38105-2794,
USA
AS I am a non scientist and if we could stop beating up the WHO for a bit I am assuming that the virus is mutating faster than previously thought what does this mean ? Are we going to need multiple vaccines. Is it possibly to have an epidemic in one part of the world but not in others or will it mean not a lot of change.
Thanks
Wayne.
The Reveres wrote ...
Oh, suffering Jesus, yes. No doubt at all. None. Nada. Zero.
Catching the blackhats responsible would be another and much harder problem by its nature.
Yes, yes, and no.
Yes, this is not really a solution, and yes, the issue is at bottom an ethical one. Those two points are pretty much inseperable. You don't uphold ethics by violating it.
But if my personal experience a decade and a half ago at NASA GSFC, and just about everything I have ever read about Federal standards of information security (military systems excepted), are to be relied upon, the levels of information security typical at LANL would probably make a grown man weep.
LANL is a bunch of scientists, at bottom. They not only have the wretched levels of oversight typical of civilian Federal sites to contend with, they themselves also have a mindset which mixes with "security thinking" very poorly indeed.
wayne: Just for the record, I don't make a constant practice of beating up on WHO. See the five part series I did at the other site, starting here: http://effectmeasure.blogspot.com/2006/06/who-part-i-300-years-old-at-b…
Nor is it obvious the virus is mutating faster than usual. Many of the mutations are synonomous base changes that made no difference in the viral proteins. Some of them may even be sequencing errors, which are not uncommon.
Yes, it is possible, maybe even likely that several strains of this virus could circulate. It happens with seasonal flu viruses and could happen with this one. Exactly what the effect this would have on vaccines is hard to say because it would depend on how much cross reactivity there was.
Thinlina: I have a lot of papers on malaria in my archives; if you e-mail me and let me know exactly what you're looking for, I'll find out for you.
Revere, IMHO, the pattern revealed by WHO's coyness on the sequence release issue, along with the refusal to acknowledge the possibility of H2H until Karo, along with the unjustified dismissal of any significance in the Karo mutations, along with the continued insistence on linking cases to "sick poultry" somewhere in the vicinity, represents an extreme conservatism in public reporting that crosses the line into a dangerous failure of transparency.
In short, a cover-up. WHO is not being straight with the public about what is being observed and its potential significance. I do not use the term lightly.
Marissa, thanks! But what was your email, please?
Sorry, found already... :)
I forgot to add...along with the decision to rewrite the pandemic alert levels to avoid raising them a notch after Karo.
Name: I totally agree that WHO's ultra conservatism crosses the line into a dangerous lack of transparency. Whereas technically it may not be a "cover up", it plays out that way in the real world. By the time WHO verifies a case or cluster of cases as H2H it is well past their own timeline for putting in the preventative measures which might halt or limit a pandemic's global spread. I think Dr. Niman has shown us the importance of knowing the sequences...it is a way to track how the virus is spreading, mutating and recombining as it goes. It shows us things like the fact that in indonesia there is a strain that is only in humans, not birds, perhaps an indication that one of the prepandemic conditions has been met, and the virus only has to become more easily transmissable. Or perhaps not, but at the very least telling us not to use sick birds as the only indicator. Will this help us make a vaccine? No, we can't make a vaccine until it mutates into the human to human pandemic form. Will it help us predict more rapidly that a pandemic is starting to occur so we can try to isolate it (or at the very least ourselves and loved ones from it)? I think it would. The issue seems at its core - as is, sadly, everything else we humans do - one of economics. Someone is afraid someone else might make money off their research discoveries. How? By making a vaccine that could save millions of lives? See above: can't be done until the final mutation that turns it into an easily transmissable H2H form. So by withholding the genetic sequences these scientists are willing to take a chance with millions of human lives for some minor benefit in economics or prestige?
with 30 % infection rate and 54 % death rate it isn't millions, it's billions.
Revere: You wrote:
"If you are a doctor and you compile data about your patients or you are aa business and compile data about your business I don't see anyone has the standing to demand it from you."
You 've been making this point earlier, but again, I dare to disagree with you. On "data about your patients" in particular.
IMO describing sequences of a new, dangerous form of illness is something different from describing patient data. In fact, it's more like describing a new form of a broken leg, and describing that phenomenon could be completely separated from the identity of a patient. It could also reveal an (anonymous) procedure in the way the doctors are trying to fix that leg. If newspapers weren't naming the patients and the places they were living, there would not be any 'patient' data, only data on H5N1. It 's more like a "clinical practice" case in NEJM.
Although I have sympathy with the poor patients who died after a painful illness, to the ouside world it's more the case histories, clinical picture, genetic sequences (something like the sociology/forensic facts/behavioural analysis of the virus as I see it), and please, the therapeutical measures they took to try to save their lives - and failed. So if the leg is broken this way, don't pull on it; don't give amantadine, to a patient with this strain of H5N1, but Tamiflu was also insufficient in regular dose and so on. With a body temperature of such and such degrees the virus is mutating faster and it gives poor prognosis. We also saw this sequence in a pig, two miles away are pigs, not in the birds at the zoo close to the house. You can't ask many patients about their last contacts when they suffer any respiratory distress, so sequences can give some answers. May be. Niman can say it.
If sufficient circumstantial reseach is done in every case.
When I stayed in Indonesia, one day I walked along the local hospital and they were cleaning it up; a lot of X-ray pictures were dumped on the street, children were playing with these and patient histories and names were readable. This siteseeing attacked my feelings about privacy of the patients, but as the whole town was knowing about me myself what I was doing, where, every five minutes I have to state sometimes others have a different way of regarding privacy and personal information. Not that I agree with them, but as I think privacy should be kept apart from the local newspaper stories about new infections, in the same way I think genetic sequences of H5N1 are different from patient information. It would be preferable to have the patients reported in a more anonymous way, but it is not feasible there and maybe would hamper local support to the family and surviving patients.
I'd like to be right on the usefullness of released H5N1 sequences and I would be very happy to experience that by positive consequences of indeed released human sequences.
And some final consideration is, that because it is in no way a practical option to wait for manufacturing a vaccine until we have a pandemic raging over the globe, killing people in vaccin factories and truck drivers and coördinators on distribution and people waiting for vaccins in their homes, and having not enough needles to give it to them all and the like. We 'd better make something with some excisting H5 strain, and make that vaccination as effective and with lowest serious side effects as possible. And start a policy on informing people about H5N1 and the pros and cons of immunization in this stage and vaccinating as many people as possible. Not? At least our immune system would recognize some of the 'clothes H5N1 can put on' when it attacks (your post march 30, 2006). It's not perfect anyway. And it won't be either.
tan06 said: "IMO describing sequences of a new, dangerous form of illness is something different from describing patient data."
I agree. To the extent that the information has broad public usefulness, does not violate reasonable bounds of privacy and was not generated by proprietary processes, should it not automatically be considered public and any professional guilty of withholding it as guilty of betraying the public interest?
H5N1 presents a grave "public" health concern. I can't believe there is even debate about holding back data in order to give individuals, companies or countries a competitive advantage in finding a solution to a problem that everyone expects to be global in reach and potentially catastrophic in scope.
As a mental exercise, I put myself in the shoes of an Indonesian official who has the authority to say 'kindly accept this list of sequences'. It went something like:
I know there is a big BF problem. The funding that has been pledged to tackle BF isn't being delivered, yet we are told to cull the animals we rear for food. The West wants the sequences we hold, despite not being too forthcoming with their own, but even if they can work something out from them they've already said their vaccine production capacity is inadequate so we don't have a dog's chance of getting any. We can't make vaccines so someone else will get rich from our misery. We rely on tourism to keep our economy afloat. If these sequences show something pretty scary the tourists won't come and our economy will go down the toilet. The West, who can't or won't help us, will have a better protected population and we'll be even worse off, relatively, than we are now. What's more they know it, and they don't care about anyone but themselves. Screw them.
Maybe they think like that, maybe they don't. It would explain a lot if they do.
Dizzy. It wasn't that the country of origin was not willing to share sequence data...it was that the world authority on the issue forgot...or was unwilling to ask for it.
As a mental excercise, could you redo the above in relation to the WHO's ignorance, apathy, incompetence, negligence, laziness...take your choice. Thanks.
tan06, Name: "Automatically"? So let me see if I understand this. There is going to be a certain category of information, othewise private, that "automatically" is subject to immediate disclosure. On whose authority? By what mechamism? By what criteria? Because you say so?
Now I don't have any trouble with the principle, here. There is quite a lot of stuff I think belongs in this category and I'd like to see it disclosed immediately. Most of it it bears on public safety issues and involves chemical company data and similar things. What do you think? Is it more or less important than some sequence data you want? I think all the proprietary drug data on Tamiflu, Relenza and vaccines also falls into this category. I think it should automatically be in the public domain. I actually believe this. Why just the sequence data?
Dizzy, I can just see it!
Revere, good points. "Automatically" wasn't the right word, since it depends on circumstances & the relevance of the information to the public welfare. If I happen to learn that terrorists are about to blow up a bridge and fail to alert authorities, or if a company knows its product poses risks to consumers, the duty to disclose is pretty obvious. If public funding and/or professionals sworn to serve the public interest in their field are involved, the duty is clearer. Certainly there will be grey areas, but when there is a serious question of public interest at stake, as I think there is here, the onus should be on those withholding to justify their actions. Such obligations to report (and penalties for failing to do so) are enshrined in law in key areas, and there is nothing stopping us from expanding those requirements if the need exists. In other areas (politics, business), cover-ups &/or failures to report come with their own risks, so pressure for greater transparency can be brought various ways.
The mental exercises I've made have gone quite a bit like Dizzy's. If the rich countries want the sequences, it will be equitable to pay the poorer countries compensation.
This reminds me of the corporate culture in the 1990's. They were pristine, untouchable, angels of ethical behavior...except it was all an illusion...
Now we have pristine regulatory agencies...above reproach, untouchable, angels of ethical behavior...after all, they only have the public's best interests at heart?
Revere: Yes, Not only the sequence data. I agree with you.
I also mentioned therapeutic procedures on patients suffering from H5N1, clinical picture/symptomology of H5N1 in patients. And I guess many cover-ups on other diseases and chemical substances also are public health affairs.
But some cover-ups seem to be 'pro-actively' created, by conflicting interests, where others are more 'passively' left, by not knowing for what sake and how to publish, as can be the case in Indonesia (the story of the visited laboratory by Mats, comment on Indonesian bird flu news: bad, worse and uninformative at EM on june 23 2006).
Hacking and lawsuits apart (though law is a good idea) it is sometimes best to begin at the beginning so to speak.
Opinion is strong; the issue is clear; it is not politically loaded. A tremendous groundswell could be created easily.
E-mail campaign. Experts pick the targets. Make sure to have a long list, as in-boxes become swamped or disabled. All letters are rigorously polite.
Go down in history as the first truly successful campaign of this kind!
Ana: Paper mail is far more effective, especially in your own words.
Dizzy: you left out: "We have 200+ million Muslims, so they want us all to die anyway."