GISAID, the Global Initiative on Sharing All Influenza Data, a service hosted and supported by the government of the Federal Republic of Germany stores the most complete and extensive information on the SARS-COV-2 genomes.
Yet unlike for all other scientific data resources, the data distributed via GISAID is locked away behind a lengthy and discriminative registration process that requires that users accept onerous and limiting licensing terms that hinder science and progress (GISAID terms of use).
Here is one of the many statements that a scientist must accept:
"You may not distribute GISAID data outside the GISAID community, such as by releasing genetic sequences obtained in GISAID in any publication".
GISAID will even relicense data that is already publicly available in GenBank! A publicly available sequence, when obtained from GISAID, will carry a license.
We believe that the data collected from across the world: China, Australia, United States, Iran, Europe with public research-funds should be freely, immediately and readily accessible to all members of the global scientific community.
Edit: March 23, 2020
User s.elbe writes: "Background information and history of GISAID (before COVID-19) can be found here:"
https://onlinelibrary.wiley.com/doi/full/10.1002/gch2.1018
Here are the relevant statements on how the GISAID data sharing was born:
GISAID's genesis was closely associated with Peter Bogner – a studio executive with a background in creating and licensing media content, and in philanthropic behind‐the‐scenes work for organizations such as the United Nations and UNICEF. Bogner provided the lion's share of funding for setting up GISAID (a low‐mid seven figure sum) and was key to the development of the licensing mechanism that defines the GISAID data sharing policy."
I understand that as a founder of this site you can bring up any topic you want, but is activism to change data access really one of the accepted topics of this site? Even if the answer to that question is yes - and it likely will be, given that the moderators define the goals of this site - this is simply inappropriate:
If I tried to shame the US government on this forum for their response to pandemic, that would likely be shut down as inappropriate, and rightfully so. It is not a matter how justified my intent - or yours - might be. It is not appropriate.
And for the record, if calling it a shame is too much for some I understand, I changed that to:
I for one believe it is disgrace to science - but I'll just call it "harmful"
It is not a matter of what you believe or what I believe. Posting your beliefs here in a form you did is, to borrow a phrase frequently used by moderators, unprofessional. I have seen many instances, some involving yours truly, where moderators have called posters unprofessional for way less than shaming a whole institution.
If the US Government limited your bioinformatics data access, I for one, would most certainly fully support you. I don't understand why you think otherwise. What makes you think we would not support you?
The post is fully on topic - bioinformatics data analysis - and brings up a very important issue that most people are not aware of or take for granted.
Anyone would be welcome to start a petition, as long as it is on topic.
I think the real problem becomes clear by looking at the punitive restriction of access rights, in response to criticism. Imagine using or working with a Linux kernel, one day you decide to voice that you don't agree with or criticize the developers or the terms of the GPL (without breaching them to be precise, just criticize), in response they shut down your right to run, compile, download or publish code based on the kernel. "Open data" that can be administered in a Louis XIV. style, depending on goodwill is not open data. To call it outrageous that taxpayers' money is spent like this in the face of a crisis is a valid opinion. As a German (even if not taxpayer) I do support it. The data belongs to the public, we have already paid for it.
They banned me, but I'll remove that statement too. It sounds like some will think I have an ax to grind.
In my opinion, it is completely unacceptable- beyond outrage - that a scientific data distribution site simply bans you if you disagree with them.
It is totally unacceptable, maybe one should keep that in mind when reviewing a paper where data was submitted to GISAID, and require that data is submitted to a real repository instead.
Reading through the terms again, it looks to me in part as if they are framed to solicit unjustified co-authorships.
That is really the fundamental problem with GISAID, they pretend they are "defending" the scientists' rights - yet they could do that just as well by releasing the data with a license that requires that you cite the scientist.
Instead, they only allow access to the data through their site and service, and won't allow even to deposit data elsewhere - even if you cited the scientist and gave them credit. GISAID wants to be the gatekeeper, that is how they justify their existence, rather than by the added value that they provide.
In my opinion, the post is on topic up until the last three paragraphs, or last three sentences if you will. From that point on it becomes activism, which I think is inappropriate for this forum. That you still keep those last three sentences only reinforces the fact that you as a founder of this site can post whatever you want, because you can. I think you should do the right thing and delete that last part. Your post will still call attention to a wrong practice without itself being wrong, because other moderators will never sanction the founder.
forgot to mention, I appreciate that you took the time to articulate what your concern was, I agree that overall being less antagonistic and militant will make for a more effective message
For me the lines that you object to are not activism at all, just a summary for nontechnical users:
"GISAID is harmful to science and open access!"
"Call on the Federal Republic of Germany to make the data freely accessible."
"GISAID enables, promotes and enforces unacceptable scientific data distribution practices that should have never been permitted in the first place."
I don't at all mind removing these. And I just did that. This is nothing more to me than stylistic flourish, maybe more emotional as typically needed.
FWIW, if you wanted to shame the US government, you'd find no censorship forthcoming from me...
I agree with you in principle. I'm curious if there are GDPR or GDPR-like regulations that constrain what GISAID and other research groups may be allowed to do regarding the (re-)distribution of genomic datasets from Europe. Or is this policy directly from GISAID, itself? I'm not a lawyer, but I wonder if there are larger legal constraints, here, that bind even the German government, if that makes sense.
The datasets are not all from Europe, all the data is there, from all locations: US, China, Australia etc.
I understand — even so, GISAID is headquartered in Germany and so would presumably be bound to German and European regulations regarding privacy, which may (or may not) apply to genomic data. Some light would be useful here.
Hi Istvan. It is not just about SARS-COV-2. Things of course should be evaluated on a case-by-case fashion, but overall I would say that paywalls and the like for scientific contents are taking a much higher toll on health and society. Also, I do not want to be mean but please remember that you are selling community-based efforts too.
Your comment is unrelated to the issue at hand - instead, you should comment on the actual statements:
As for your comment, yes of course! Paywalls to published research are just as bad. Does that address the GISAID practice where now you can't even access data? At least there are ways to get a publication from other sources.
Please also stop with personal attacks, be stronger than that. Many people when they run out of arguments start the personal attacks. Don't be one of them. This issue has absolutely nothing to do with how this site is supported. What are you hoping to achieve when comparing a global, taxpayer-supported data distribution platform to Biostars?
Istvan, I genuinely do not want to be mean. I just wanted you to think that this case might just be among many other factors that hamper research, and even health-relevant research. The fact that Sci-hub exists (if this is what you mean) does not make the whole publishing machine any less criticizable than what GISAID might be.
The second part of my comment was indeed a reference to the text book promoted on BioStar (which is per se a commendable project). You are certainly among the main promoters of the initiative, and this is the only reason why I invited you to reflect on its business model: in smaller proportion, it recapitulates things that you are criticizing here.
I think we will make more difference if we spread the word on this particular case, send the ministry an email or two, make more people aware. This licensing and data distribution reflects a model that should have not been accepted in the first place!
Once this issue is solved we can come back and explore the minor tangential issues that may or may not be relevant here.
Yet my feeling is that this is just one particular example of a still very diffused phenomenon, namely single entities selling (aright or not) knowledge about important topics to the same community that has produced it. But I understand that we all have our personal sensibility, and of course that one has to start from somewhere!
I feel like the German government should seize the data and make it truly open.
Hi Istvan. I agree. It is very ironic to call an initiative Global Initiative on Sharing All Influenza Data, and then explicitly prohibit sharing of data. In my opinion, public funding should in general not be used to generate restricted data. Somehow, these restrictions will work against scientific publications based on them. How to publish an analysis based on the data, if one is not allowed to publish the basis of findings?
The Federal Ministry of Food and Agriculture seems to be the host and main source of funding. Maybe we should send a petition to Ms Klöckner and ask to change this waste of taxpayers' money.
Visitor's address: Wilhelmstraße 54, 10117 Berlin Postal address: 11055 Berlin Telephone: +49 30 / 1 85 29 - 0 Telefax: +49 30 / 1 85 29 - 42 62 E-mail: poststelle@bmel.bund.de
Excellent idea. I will send an email. I would suggest others do it too.
I just wrote them a mail requesting the unrestricted release of all SARS-CoV-2 data. Let's see if/how fast they act.
Dears, this is just to notify that two comments I left here 19 and 21 h ago (see below) are now missing. Did anybody remove them?
Missing comments:
I removed (moderated) my own posts to shorten this discussion and keep it focused on the main subject,
when you remove a post (your own included) replies that directly attach to it also disappear
This is not nice, Istvan.
Genomic research across a globe is hindered by a company of dubious origin. Our duty as scientists is to keep data open, research reproducible. This is what this thread is about, this is what its purpose is - my hope is to keep the focus on what we are trying to achieve.
Istvan, you are heavily editing a forum topic using moderator privileges and based on very subjective evaluations.
Even if BioStar turns to be a legit platform for activism, at least you should leave the dialog open, and let the reader form their own opinion.
I am deleting my own posts - no moderator privileges needed there. You are also allowed to delete your own posts at any time, and for any reason.
If you feel strongly about the way the site is moderated and you don't agree with this policy, please start a new forum thread talk about it there. This thread is not the right avenue for that.
I just disagree on the way this specific thread is moderated. The fact that we all have buttons to do this and that should not, in my opinion, be taken as a plain right to use any tool as we want. By that token, in principle I would be perfectly entitled of filling up this space with profanities (not that I intend to do so). So if you decide to delete your comment, knowing that this action would also cut off two comments from another person, you are actually taking the freedom to delete other people's opinions on the matter, treating them as garbage. For instance, I already expressed the idea that research being hindered by companies is no news at all. Why should this opinion be irrelevant here?
I think that we are ultimately trying to do what is good, here. How would you explain to the public that potentially useful research data on SARS was being restricted, and that the organisation restricting it was actively blocking contact with users who complain?
Edit: granted, this is not new, and has happened, e.g., in cancer.
Hi Kevin, I am aware that you all mean to act in the interest of open science here, I was just expecting a bit more respect.
Sure thing / Certo - let's try to see our common goals and get through this together. Insieme, siamo più forti!
Ok Kevin, thanks for your (unnecessary but appreciated) attempt to mitigate things. I will keep following your efforts on this particular issue as I would have done anyway, ciao!
Va bene. Ci vediamo dopo.
I have reopened everything I posted, I think it adds nothing to the discussion but if you feel so strongly about it sure, I have no qualms about it.
I was hoping the make this thread less like reddit style wrangling, derailed onto unrelated topics.
I see your point, just thought a forum thread should stay open for discussion, especially for comments, which serve this scope in all kinds of threads. Thanks for bringing my comments back, it does make a difference!
In addition, we live in exceptional times, and we see exceptional situations.
Politics and activism were never a focus here until it actually encroaches on what we do - until we see the fundamental problems.
You have several choices: drive it, be sympathetic, be neutral, move along with indifference, be a doubter, or be an obstacle. Think about how you want to look back on your contributions once we solve this.
wait.. what? #facepalm
I think we have to ramp this action up somehow, politicians and decision-makers won't recognize it here. Possibly by:
Online petition platforms:
https://www.openpetition.de/
https://www.change.org/
Also could be self-hosted on wordpress with this plug-in