From Flu Wiki 2

Forum: How to Get Nations to Release Their Data

02 August 2006

Dude – at 00:29

I know each country has some very real issues about the release of their data. There are some very real issues for them such as economic loses, tourism, trade, domestic politics, etc.

We keep saying free the sequences, yet every nation state has a vested interest not to do that. This is the conundrum.

Let me post just one idea on how this could be done:

We assign a nonsequential number system to geographically contiguous nations or another boundary system that makes more sense such as an ecological wetland area. This number system then proceeds in the same manner with the animal, date, etc. What you do then is have WHO hold the translation table.

The sequences could then be released to the world with all the best minds working on the issues and not the politics. If a situation warranted a trade embargo, WHO does it job and says, for example, “Don’t import chicken at this time from the United States. Or be advised of a tourist travel restriction to Canada due to a breakout of H-H transmission in the eastern provinces…etc.”

What this will still allow is for the epidemiological data to be organized in the same manner. Now the press will be able to piece the information together if they want to do a job that they seem incapable of right now i.e. getting the facts and drawing the correct conclusions; but I feel that this will allow the details to be lost to the general public because they and much of the press will not follow the dots in any organized or sustained way.

We will also need a carrot and a stick. There has to be some real consequences for not sharing this data and some rewards for do so under this idea. I leave that to the diplomats. Well, not all of it…part of the carrot is then a news censorship of reports. Instead of the nation of Caro has… we get a news that has only the code: Nation 54387 has…a cluster of 10 people…Those releases are handled by a press core that is given access to the translation table. They sign personal nondisclosure statements etc. This needs more work…just formative right now.

My hope in starting this thread is that the focus would be on other ways we might do more than just demand what needs to be done. We should brainstorm what might be the reasons behind holding the data and a system to release the data with only appropriate National Public Health Sanctions for real emergencies that the public must know about.

I don’t care if I know that the pandemic is coming from Egypt, as long as I know that all sequences have been released by all states and are public property. Then the announcement is that sequence 456687/pig/09/06/06 is the pandemic strain and here it comes.

 Does this make any sense? What else can we do that addresses the root problems?
Dude – at 00:36

Just saw the thread about the FAO…NVM..or maybe we could just delete this…or post there?

Tom DVM – at 00:45

Hi dude. Interesting topic…and important.

When will the sequences be released…about 1 hr. after the pandemic is confirmed…by that time H5N1 will be in 5 or 10 countries around the world.

Why do they not release the sequences…because they can.

How do we get them to release the sequences. I think the analogy would be the visit to Scrooge at Christmas…by Dickens…

…we explain to them what is going to happen to them if they do not ‘cover their *****’ before the pandemic starts…which may be a lot sooner than they think.

After the pandemic with what increasingly looks like significant loss of life, there will be a board of inquiry investigating the equivalent of ‘crimes against humanity’…

…In that inquiry, they are going to be called for the world and more importantly for their fellow citizens to see. What is their answer to be…someone else’s problem.

Well, ethically speaking, if you do not have the power to force countries to release the sequences then you have an obligation to stand before us now (aug 2006) and clearly state the problem, who is the problem and what we have to do to fix the problem…NOW.

We have to convince them that the pain of doing nothing (the status quo) is far greater than the pain of simply being honest and acting…ethically.

To fail to do so at this late date will result in significant personal pain after the fact if the pandemic H5N1 doesn’t do it first!!

Tom DVM – at 00:51

If there are a lot of good and ethical persons in the offending regulatory agencies…then it is time for them to stand and be counted or be just as guilty as the higher ups…guilty by association and by an ongoing and deafening silence.

You cannot hide by the insulation provided by these agencies in management structure…I don’t think the world is going to be very forgiving of this kind of excuse…after the fact.

glo – at 02:06

Looking at it separate from governments keeping secrets for whatever reason, this stuff is the currency of the trade for science. It’s the meal ticket at every level. There is no incentive to disclose and every incentive to hoard it.

Even the CDC’s study that’s been the topic of conversaton today. There’s been no mention of that, anywhere, anytime. Three months, six months ago, the big guys could’ve issued a press release informing the public of the planned study, the parameters and what they would be looking for, and the public (us) would’ve breathed a collective sigh of relief and thought “okay, they’re on it, no problem”. Then today’s announcements would’ve been a follow-up, building on the first bit of information, appropriately reassuring, rather than feeling confused and blind-sided.

Melanie – at 04:09

While all of the nations play out their own reasons for keeping the data out of the public eye I will just note this: Nature doesn’t grade on a curve.

ANON-YYZ – at 10:38

glo – at 02:06

Can we called this “the Gene Sequence Cartel”? If yes, any one studied the history of how cartels got broken?

anon_22 – at 10:57

Gene sequences are most helpful when interpreted together with clinical and epidemiological data. Having access to the sequences without being able to figure out where it came from and the relationship between different strains, well, I wouldn’t say it would be completely useless, but it would be close. I can imagine the fierce speculations and confusion that would result!

Monotreme – at 11:07

I agree with anon_22 that we need detailed information about where and when the sequences come from. And we need completely open access so the many scientists not associated with the WHO can work on them.

I think most countries could care less about releasing the sequences, either way. It’s the exclusive club affiliated with the WHO who are responsible for blocking most of the sequences. The only country that really cares is China. They don’t want anyone else to know exactly how H5N1 “evolved”. And they will do pretty much anything to stop anyone from figuring out what happened. Including using alot chips to install the next Director-General.

Tom DVM – at 11:16

Monotreme. The World Health Organization became irrelevant quite a while ago. It doesn’t matter who is driving the old, worn-out,stuck in the mud, badly designed bus…

H5N1 is driving a Masserati with the roof down etc.

Monotreme – at 11:26

Tom DVM,

But who is driving H5N1?

Tom DVM – at 11:34

When ‘nature’ is doing good things like the double rainbow I saw last Saturday night or all the Monarch butterflies that are around this year…then I use the term Mother Nature…she is my god and nature is my church…but I digress.

When ‘nature’ is doing bad things like repeated significant patterns of mutations in parasites, bacteria and viruses…then I just say nature is doing it…

…nature is driving but it does seem like H5N1 aka frankenstein aka freak seems even to be overriding nature…I’m sure nature didn’t want it to get this bad.

The other question is easier…you know the one about the stuck in the mud, worn out etc. bus…the answer is it doesn’t really matter or who cares.

We have talked about the only two candidates that might make a difference…Dr’s Nabarro and Osterholm…question is who would be crazy enough to do it.

I would like to know how all those good people in the WHO managed to collectively loose their voices remarkably at the same time…and so completely to.

You would think someone would stand up to be counted or maybe even leak a little but no…wall of silence…

…They are going to find out that they were guilty by association…and I would not want to be implicated in any way for what now seems to me as unavoidable.

Dude – at 16:27

We have a self reinforcing system in that the legal tender of the profession is the access to the seq. and the nation state has vested tourist, economic, cya, issues. So, they play to each others hand. This is indeed a cartel. This is indeed illegal by common law and could very well be crimes against humanity. I posted the agreement with Tom on that some time ago. So, this is the moral equivalent of war on humanity is it not? If each nation state does not go on record declaring that their sequences are allowed to be in the public domain, then the leaders of those countries must be prepared to defend them self before the world court at some post pandemic time. The rule of law in Western culture and civilization has evolved to such an extend that this is a reasonable case to be made. So, how can we break this cycle? All politics are local. How, about this for a game plan? We start by drafting a good statement about why the sequences should be free. We then word it so that a local government, first town, city, county, state, and last Federal can adopt this as a principal. We then take that statement to our city/Town government and present it for adoption. We then get other local governments to do the same. We then work on our State governments for the same resolution, complete with press all along the way. I personally like this idea better than my original posting. What do you all think? If you have not guessed I have done things like this before.

anon_22 – at 16:38

Someone should get started with the CDC.

They need to make it a policy to disclose all genetic sequence data unless there are specific reasons not to do so. Those reasons need to be given in detail in a publicly scrutinized and debated policy document, with each exclusion requiring a process of application and review by an independent panel.

ie changing the default position from the current one of non-disclosure barring exceptional circumstances, to disclosure unless otherwise excluded.

If the top public health agency in the most developed country will not fulfill their public obligation, how can we possibly expect other countries to meet that standard?

ANON-YYZ – at 19:00

I still say the dominant moral issue, now that FAO is going to release all animal sequences, is:

      animals now got a better chance than humans to head off a pandemic 

with scientists examining the sequences and therefore looking for a solution.

This has now become a fundamental human rights discussion.

All of other issues are unacceptable excuses and must be put aside, including such issues as the meal ticket, bilateral trade relations, we won’t do it if another country (i.e. China, Indonesia) won’t do it, etc.

If you want to start with the CDC, it’s fine by me.

Dude – at 22:24

So, can we get a statement that I could bring to my local government? I would love to have someone draft this issue so we can communicate to the entire world our understanding of the mess we are in. I am not qualified except as a second editor. I know this can be done. I drafted a state law in this manner. We worded it so that under the home rule provision of our local Town the Attorney General had to sue our Town Meeting, you see, we the people had exceeded our authority. This put the issue in the press and in a matter on weeks we had a new state law. It did take us an initial study commission to draft what we wanted to say. To create the study commission I stood in front of a bank and gathered enough signatures by myself to get my issue considered at Town Meeting. It works. So if we can do this even in just a few localities, things have a way of infecting others. We can be our own virus…Could this help? If anyone wants to e-mail me a draft I would be happy to put all suggestions together and post the results…or anyone else may take the lead on this, please offer or subject this to critical thinking. I refuse to lead, and I will not follow, but I will work with everyone.

ANON-YYZ – at 22:32

Dude – at 22:24

I respect your commitment. Keep bumping this. Right now, people are trying to figure out the Karo cluster.

It would help if you could also post here for brainstorming a list of objections or ‘excuses’ to not release. We can then debate those and debunk them, before drafting a well researched letter - so it doesn’t get shot down quickly.

Dude – at 23:37

Reasons for a nation state not to release these sequences:

1. Economic& political a. They will suffer from loss of tourism. b. They will suffer from loss of trade. c. Local panic will cause civil unrest and lost income. d. People will be too scared to work. e. They will have lost the competitive advantage of selling the world the vaccine that they have produced by use of these sequences. f. The extent and duration of the infection might become known. g. The world, their population and their political opponents can use this against them in different ways. h. Local third world people will starve and have their ability to support their family curtailed. i. The government would be better able to govern with fewer people. j. The political leaders have all decided that in order to save the world, we must curtail as swiftly as possible the use of fossil fuels and limit world wide consumption and use of all resources. k. Religious zealots see this as a punishment or rapture or an opportunity to rid the earth of infidels of every stripe. l. It is biological war by a nation state(s) that think they can survive and expand and therefore must be kept secret. m. Ineffective and weak systems that can’t rule. n. Corrupt systems that want graft before they will cooperate.

2. WHO and affiliated labs

a. Lots of money available from private and public sources for those that find the magic elixir of life. b. A noble prize. c. A life of prestige and power. d. A long and heady resume. e. Restrictions built into WHO’s organizational (ancient) structure. f. The interplay of all the reasons (1a thru 1n) above and those in 2. g. Rule by committee. h. Incompetence and lack of moral fiber. i. No risk takers. j. Disdain for the “bottom feeders” of their profession i.e. those not affiliated with a seat of power. k. Publish or perish. l. Arrogance, self centered personalities. m. Rules and restrictions and politics and corruption everywhere a good person turns. n. The power of a few nation states that can rig the process for the outcome that they wish for any of the above reasons. m. They have the right to do this work and nobody else does.

Grin, if we can make this case, do you think we might have the moral high ground?

03 August 2006

Dude – at 00:38

bump

bump – at 00:57
bump – at 01:17
please keep the pressure on – at 07:56

bump

ANON-YYZ – at 15:20

I found this article on another thread, thanks to Thinlina:

H5N1 countries putting caveats on samples’ publicity

Blackout’ threat to bird-flu analysis 02 August 2006 By DAN EATON Indonesia is failing to send bird flu samples to official laboratories, creating a ‘data blackout’ that could have serious implications for New Zealand as it seeks to ward off a pandemic

http://tinyurl.com/m63ex

08 October 2006

Closed - Bronco Bill – at 22:03

Closed to maintain Forum speed.

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