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Abdulrahman El-Sayed

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SOPA's Killer Cousin You've Probably Never Heard About

Posted: 01/26/2012 11:39 am

One of the greatest public goods our taxpayers fund is biomedical research.

Findings from NIH-funded research are used day-in and day-out to help doctors make treatment and diagnosis decisions, to help health departments better allocate their resources to promote health and prevent disease, and to inspire new ideas for the next generation of medical breakthroughs.

That's not just here in America, but all over the world.

Compared to all of the direct foreign aid our government disburses and all the flag-waving it does in an effort to improve our image on the global market, freely available NIH-funded research is among the best displays of goodwill we put forth. Consider, for example, a recent conversation I shared in an Alexandria hospital with Dr. Salah, an Egyptian surgeon. When he found out I was American he proclaimed "God bless America for Pubmed" -- the National Library of Medicine's online search engine for health research.

But that may soon come to an end. A recent bill, the "Research Works Act", proposed under pressure from the Association of American Publishers, threatens to strangle access to health research to protect the interests of a few greedy corporations -- it would keep crucial, life-saving information from doctors and scientists who use it to take care of people and contribute to knowledge.

You see, almost all high-quality health research is submitted for publication in academic journals -- journals like the Journal of the American Medical Association (JAMA), or the New England Journal of Medicine. They serve the purpose of coordinating peer-review, organizing the health literature, and benchmarking high quality research. Peer-review is the process by which research articles are sent out to other scientists who read and evaluate them for rigor, clarity, and importance. Reviewers score articles and then recommend them for publication, revision and resubmission, or rejection.

Reviewers aren't paid for their services, and in most cases, neither are editorial board members who shoulder the actual responsibilities of coordinating peer-review. But as you can imagine, these journals are a lucrative business.

Then who sees the money?

Publishers do: companies like Elsevier and Wiley. The fact that you've probably never heard these names before should tell you just how (un)important they really are in the whole process.

As it stands, publishers are allowed to restrict NIH-funded research by subscription for one year. At that point, the NIH requires that all funded research be released to the public and made easily accessible via Pubmed -- where people all over the world, like Dr. Salah, can then use it to inform diagnostic and treatment decisions or guide future research.

This bill would make it illegal for the NIH to mandate unrestricted access to published NIH-funded material -- choking this crucial information off from health providers and researchers who are unable to pay.

This bill is one last plea for protection from a dying industry -- a result of the changing scientific publishing market.

Not only are there more journals than ever before, but traditional heavy-hitters are facing new competitors. For example, the Public Library of Science (PLoS) flagship journal PLoS Medicine is now regarded almost as highly as JAMA. What's more, newer journals, like the PLoS brand are adopting an open-access model, where researchers are charged publication fees, but access to their work is never restricted. Like email did to snail-mail, these newer journals are outpacing their out-of-date, out-of-touch counterparts.

This bill would force taxpayers -- who pay for NIH-funded research in the first place -- to pay publishers for the right to access the science they've paid to have done.

What's worse, the heaviest burden of this insidious bill, if passed, would fall on the poor and underserved.

At home, it would keep crucial medical information from doctors who serve low-income patients and who can't afford the steep subscription costs. In low-income countries abroad, it would choke off doctors and scientists who rely on NIH-funded research to improve the lives and wellbeing of billions of people.

Unfortunately, the world of scientific publishing isn't as big as, well, the entire Internet -- so the word's not getting out. But this bill is arguably just as dangerous -- if not more dangerous -- than SOPA.

Access to crucial scientific knowledge is at stake. Help kill this bill and save lives by contacting your representatives and expressing your indignation today.

 

Follow Abdulrahman El-Sayed on Twitter: www.twitter.com/elabdul

One of the greatest public goods our taxpayers fund is biomedical research. Findings from NIH-funded research are used day-in and day-out to help doctors make treatment and diagnosis decisions, to h...
One of the greatest public goods our taxpayers fund is biomedical research. Findings from NIH-funded research are used day-in and day-out to help doctors make treatment and diagnosis decisions, to h...
 
 
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DXM
An extreme moderate
02:11 PM on 01/31/2012
I, as a taxpayer, should have free access to the results from publicly funded research. If this amendment to the Research Works Act that limits my access to this work gets in, I have an additional amendment to propose: All scientists are banned from publishing the results from publicly funded research in journals that restrict access to the public beyond some reasonable time limit (such as the current one year limit). If the large corporate publishers are trying to make more money (which is their right even if it is based on a dieing business model), they don't have to do it using research results funded by taxpayers... they can get papers from other sources.
04:33 AM on 01/30/2012
It may be time to replace the for profit publications or at least read Lawrence Lessig's book “How Money Corrupts Congress and a Plan to Stop It” and work to take back our country.
Wib
Liberal former Marine who loves fly fishing and is
09:33 PM on 01/29/2012
Depend on corporations, and these publishers are corporations, to try to screw taxpayers and everyone else they can to make money. This bill, as you point out, needs to be stopped. I don't know how word can be gotten out, other than through your post. Thank you for that. And keep trying to get the word out.
02:48 PM on 01/28/2012
Don't just post here! Post to to your respective lawmakers! Sign on to every associated petition! Look what happened to SOPA and PIPA in the USA.
Remember autocorrect seems to have a problem with "they're", "their", and "there". (Sorry, Pet peeve.)
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02:30 AM on 01/28/2012
I'm beginning the dislike the concept of publishers more and more. I've known about how unfair copyright is to writers and artists, but I was not aware of this problem with science journals. It seems like whatever industry or field you go to, the publishers have ridiculous amounts of control over content they are merely distributing, but did not themselves create. It is certainly not fair use. I hate it, and hate living in a country that gives us free speech through our art but not the right to keep it our own.
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Thinkster
I Think, therefore I POST!
08:43 PM on 01/27/2012
Should this foolish bill pass, it would signal the end of the Journal of the American Medical Association and the New England Journal of Medicine - scientists will simply publish elsewhere - the electronic publishing age is here and it's healthy - the people pushing this baloney are in denial.
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onionboy
Blessed are the Cheese Makers
06:07 PM on 01/27/2012
The problem I've come across the with publishers is another one that has to do with the integrity of published data...they are reticent to retract. Their publishers, not academics. They really don't care about the integrity of the academic or scientific process. If a university says a a paper is completely fraudulent and provides proof, the journal can give them the finger. Even if the federal government (ORI) does it and provides a documented investigation and evidence, the journal can give them the finger. I've know of papers where the authors (and I mean, all of them; first, co's, and senior) have sent letters of retraction or correction...and the journals gave them the finger.

When those forms are signed for submission, not all journals are the same. Some give the authors no rights or very little rights over the manuscript they're having published. Most authors tend to think that, at worst, their fate lies in the hands of the editors with regard to future use of the material; but it's the publishers that hold the rights when rights are granted.
07:55 PM on 01/27/2012
That's one of the negative aspects of copyright law, which is probably more watertight than any other law ever designed by man.

But, again, there is nothing to stop the community from establishing new channels of publishing. Science publishers, just like book publishers and record producers are a remnant of the times when the physical publishing process was technically hard and expensive. Both considerations have seized to exist about two decades ago.
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onionboy
Blessed are the Cheese Makers
08:18 PM on 01/27/2012
It's watertight because it's become so heavily lobbied by certain corporate interests who shall remain nameless, but who have gotten the law changed EVERY time Steamboat Willy was in danger of becoming public domain.

I'm an author. I appreciate copyright. What's more, I appreciate it's purpose. Originally, the purpose was so that artists could make money off their works so that they could make more works, rather than having to hold down other paying jobs. That's good for a country, good for the artist, good for art, and I fully agree. But I feel it's been prostituted. We have grandchildren of artists still mooching off the copyright of their grandfather. Money from their work, what they earned, and so forth...that makes perfect sense. But the copyright? Who does that serve? It doesn't serve the artist. Their dead. It doesn't serve the country. The kid's producing nothing. It doesn't serve art. Again, the kid's producing nothing.

It's just been stretched too far beyond the life of the artist and does not exist for art anymore, just for corporate interests trying to ensure they can profit from IP 90 years later.

My rant is over.

Your other points are correct. If only we could get academics to actually start doing something about it.
05:34 PM on 01/27/2012
Nothing stops the medical and biotech community from posting their papers on pre-print servers, a common practice in physical sciences these days... same paper... just not peer-reviewed and not formatted for the journal.

You can read it, think about it and then ask the author to send you a real pre-print of the actual journal article for free.
01:45 PM on 01/27/2012
as usual, Corporations are using an Orwelian name for their bill: "Research Works Act". If you don't read the article, only the name of the bill, it sounds like somebody wants Research to Work better. My idea is that researchers should share their information, so I assume the bill improves on that. But as usual, it does the opposite. The correct name should be: "Kill free information Act"
10:06 AM on 01/27/2012
Its an interesting article. Huffington post certainly has their 'spin' on the situation. I am quite aware of Wiley and Elviser. My students do run into issues when trying to access these documents that are only available for purchase - they are not allowed to use articles that require purchase. However, the publishing companies ('big buisness') have to make money, otherwise, what's the incentive to provided the publications. Given the size of the articles, the quality of the images, and the details of the figures, it probably costs a fair bit to create the publications of the quality required. As the law currently stands public funded research is accessible, after one year. I'm not sure any limit on THAT will actually happen. Its an interesting issue - without revenue the publishers would go out of business, without publishers peer review wouldn't happen - science needs to be vetted -, without access students can't learn... Everyone has a side, all are valid. Hopefully there will be some common ground reached.
05:16 PM on 01/27/2012
They could use advertisement based revenue, like many information based sites. Furthermore, the key issue is that these studies have been funded by the general public (not the publishing companies) and thus, the general public has a right to know.
02:26 PM on 01/28/2012
Revenue is fine, but the goodwill that PubMed is also good. I wrote my Congresswomen to either not sign this bill or amend it to support PubMed.
08:25 PM on 01/26/2012
Fortunately, PLoS model offers a simple remedy for all of this, and this process already started quite a while ago. It is all in hands of scientists. SOPA bill, even if introduced, may become totally irrelevant. More and more scientists will submit results of their work for immediate free access to pear-reviewed journals such as PLoS which already gained solid scientific prestige.

At present rate of progress in biomedical research, especially in cancer research, it is unacceptable to limit access to the results of tax-payer’s sponsored research even for one year.

Present publishing system must adapt to the new reality. And this will happen with or without Congress intervention, in spite of any bills like SOPA.
06:17 PM on 01/26/2012
As a researcher in molecular diagnostics and targeting of human cancers, this hits at my doorstep. The "benchtop to beside" vision is happening, now. Discoveries in the lab are translating from theory to treatment at a pace unheard of a decade ago. Publicly funded research is directing drug industry development in months rather than years, and drugs are being sent back to public researchers just as quickly for human trials, and for the lucky few that fit the right molecular profile, something approaching a cure is in the hands of patients. And now, to boost profits for a tiny segment of the industry (and to pay back campaign contributionsthe brakes get slammed on. Forget entirely about the impact on research.....its in simplest terms another horrible example of pay-for-play corporate welfare. Not only do these publishers profit from the research that the taxpayers footed the bill for, they also get to charge huge subscription fees back to the research institutions. And guess who pays for those subscription fees? And now double-dipping for one year aint enough...more more more...and they are willing to buy legislators to get it done. I thought the courts upholding the rights of corporations to patent gene sequences to gouge patients and stifle research was the worst I had seen in my years of cancer research....and now this hits. The depth the tentacles of greed go is astounding, makes me want to vomit.
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TMTDC
404 error: Witty quip not found
05:52 PM on 01/26/2012
Thank you for the information and the warning, Mr. El-Sayed. Is there anything else we may do beyond contacting our congressional reps? For instance, is there an online petition available regarding this bill?
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Abdulrahman El-Sayed
Social Epidemiologist, Writer
09:06 PM on 01/26/2012
Certainly--help spread the word! Share this information with friends and colleagues, and have them contact their representatives.

As for an online signature, here's one: http://www.thepetitionsite.com/207/support-the-open-access-movement-stop-the-research-works-act/
02:36 PM on 01/28/2012
Thanks. Already did a personal "cut and paste" e-mail to my Congresswoman. Signed this one too.
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TMTDC
404 error: Witty quip not found
08:02 PM on 01/29/2012
Thank you for the information!
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Martin Houde
I am no microbe
05:13 PM on 01/26/2012
This is scary. As a PhD candidate in pharmacology, I use Pubmed almost daily. We already struggle with papers my University (in Canada) is not subscribing to, with the "1-year embargo", with the (quite new) electronic archives of scanned paper version of old issues that many journals that charge an extra subscription, on top of their "standard" one. Those, my University, which already paid for the paper version and pays for the standard subscription, doesn't make available to me. I miss data this way. Sadly, my University can't afford more fees.

Elsevier is a giant in that regard. Many journals are optionally open-access : authors can pay no fee, and not have their articles open-access. Or they can pay a fee, and the article will be free. But that fee is quite high : 3000-5000$ for a single paper. That is over the monthly budget of my own lab, but if we were a NIH-funded lab, we would be forced to pay it, perhaps making the lab unable to hire a new student (such a requirement was turned down in Canada's version of NIH, CIHR, because of exactly that). Ridiculously, with the almost disappearance of paper versions for most journals, fees for colour (2000$ per figure) can also be charged. When you do imagery, that can hurt your bottom line.

A big thanks for this article.
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Sister Bluebird
04:43 PM on 01/26/2012
I find it difficult to believe that this bill would pass the lemon test. Wouldn't this amount to violations of FOIA, perhaps open records, as well as taxation without representation, and a host of transparency issues?

Tax Dollars are what makes this to some degree public domain if for no other reason than accountability for starters.

This sounds a lot like the Haliburton Loophole. I think I would be looking for other players in this mess, perhaps chemical companies for starters? Big Polluters? Because right now---these past decade has seen an unprecedented amount of research showing serious, long term health effects due to toxins in food, water, and soil via pesticides, plastics, petroleum processing, and the like. Things like organophosphates tied directly to Parkinsons, Diabetes, and ADHD for starters. BPA to PCOS, as well as to reproductive problems in fetal and infant development.

Great article. Thanks for bringing this to our attention!