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Esther Wojcicki

Esther Wojcicki

Posted February 25, 2009 | 09:48 AM (EST)

Bill Before Congress May Close Medical Research to Average American


It looks like Congressman John Conyers needs to do his homework on the impact of science policy on the health care for the average American. Turns out that he introduced a bill that would effectively forbid the US National Institutes of Health from allowing taxpayers (you and me) from reading the results of medical research that we have paid for with our tax dollars.

He introduced a bill called "Fair Copyright in Research Works Act" that is anything but fair. It is opposed by 33 Nobel Prize winner, a coalition of patients' rights organizations, and American Research Libraries among others. It should also be opposed by anyone who thinks someday they might get sick and need the latest medical research -- which means all of us.

"This bill would forbid us from building the World Wide Web for science, even for the research that taxpayers have funded. And that is truly a tragedy", according to James Boyle professor of law at Duke and co-founder of Science Commons. "We cannot create such a web until scientific articles come out from behind the publishers' firewalls."

Right now the NIH requires researchers who get federal funds to make their articles available no later than one year after publication -- so publishers have a year of exclusivity. This Bill would forbid even that modest approach if there was any contribution to the article by anyone other than the Federal government (for example, by an editor.) Effectively, that means that any article published in a commercial journal would be off limits to the public that paid for the research behind it, unless they paid a second time to see the final results.

How to protest? Send a letter to your congressman and tell him how you feel about locking up medical research behind financial walls. Tell him/her we need to open up science research to improve everyone's access to important medical data. Alert him that even his doctor may not have access to important medical information that may impact his life.

Click here for another blog on this subject by Professor James Boyle.

It looks like Congressman John Conyers needs to do his homework on the impact of science policy on the health care for the average American. Turns out that he introduced a bill that would effectively ...
It looks like Congressman John Conyers needs to do his homework on the impact of science policy on the health care for the average American. Turns out that he introduced a bill that would effectively ...
 
 
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10:00 AM on 03/02/2009
To Esther and others, the notion that doctors aren't accessing information to help patients today is patently absurd; for far too many reasons than I could list here. I challenge anyone to find a doctor that has ever said they'd like to help a patient, but can't because they dont have access to a 20 page journal article, it's simply not how medicine is practiced.

Not paying twice for taxpayer funded research sounds good, but is utterly misleading. What people don't understand is that research is research, and publishing is publishing, and taxpayers don't pay for the publishing part. Author's manuscripts have always been free to access, but the problem is they aren't reliable until they've been published -- that's the part that's worth paying for. Please stop the exaggerations people!
08:06 AM on 02/26/2009
This problem goes way beyond just medical research!

Taxpayers' money is used to fund all sorts of research, from wind energy, to biomedical applications, to telecommunications, etc. In every case, publishers like the IEEE (originally an acronym for the Institute of Electrical and Electronics Engineers), who claim to be non-profit, charge excessive fees for copies of articles paid for by government sponsored research. Authors are NOT paid, members have to both pay for membership and subscriptions to journals along with additional fees for any other article; magazines advertise just like any other for-profit magazine. University libraries pay huge annual fees for access. Scientists and Engineers, that do not have access to these libraries and working on similar government-sponsored research, pay research dollars into this system for access to information that has already been paid for and should be accessible. Everything is paid for multiple times over; yet, the IEEE claims to be non-profit.

ALL articles published using ANY taxpayer-funded government-sponsored research should be made accessible to everyone after one year; there should be no exceptions. We have already paid for it.
08:37 PM on 02/25/2009
Don't these people read the laws they want to pass?

I guess the answer is no and it happens at all levels of government.
08:28 PM on 02/25/2009
Esther: Done! Thanks.
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SilviaMaria
07:54 PM on 02/25/2009
I sent the email to Ron Klein, my representative and I used some of the language in your post. I agree; I do not know what was he thinking.
07:40 PM on 02/25/2009
Sometimes it pays to be one of those people who volunteer to be guinea pigs for the latest up and coming research. If this bill passes, then President Obama's pledge of putting Health Care back into the hands of the patients will be broken.

In this economy, there are already a lot of people who can't afford health care insurance, and if they can't afford health care insurance to go to their doctor to ask what the best most recent most effective treatments are, then there is a good chance they can't afford the cost of a subscription to the health care journals where these studies and research are published.

And, my fear is that, if no one can get access to this kind of health care information, then the government will start to say that it is rediculous to do the studies and research if no one can find it, because they cant afford it themself or through their doctor.

This legislation MUST be stopped.
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Kassandra
Your micro-bio is empty
07:23 PM on 02/25/2009
What an odd thing for Conyers to do. The only thing I can think of is possible patent infringement by other countries
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LiberalBuzz
Voting republican is voting against America.
03:35 PM on 02/25/2009
I wrote Conyer's office (NOT that he probaby has EVER read a message from a voter) and asked him if he had even read or actually written the bill or if was handed to him by someone from a lobbyists group and TOLD to introduce it.

As for "Free" medicine I didn't see anyone asking for "Free" medicine but the research SHOULD be out there and also subject to review by anyone. WE paid for it.
12:28 PM on 02/25/2009
You can get access to every paper ever published for free or, at most, a modest fee through your nearest public library that has a library exchange program. The online fees of most journals are nonsensically high and are mostly there to force libraries to buy their online and paper subscriptions. But journals are companies which have to make a profit. They do not perform the publishing service for free. Anybody who wants to publish their paper online so it stays accessible for free can do so over pre-print servers.

Now, I agree that we shouldn't let this become law because it would make an already poor educational system even poorer. But it will not stop the public from accessing this information. It will simply make it harder.
11:59 AM on 02/25/2009
Almost all basic medical research is carried out with public funds. Further discoveries based on work that is public should also be unrestricted by patents. If that means that public funds need to be more broadly available, so much the better. The notion that medicine should be driven by markets - so that diseases of the rich are more attractive than those which affect the poor - is simply obscene.
12:30 PM on 02/25/2009
The notion that medicine can be had for free or cheap is ridiculous. Please try to add up the cost of the medical facilities you go to the next time you visit. Medicine is like everything else in life: you get what you pay for. And since government research is only a few percent of the total cost, it's simply not the financial bottleneck.
01:43 PM on 02/25/2009
Nobody is asking for free medicine. But there should be free or inexpensive access to published research that has already been paid for. Money is committed to research before the research is conducted and it is not just a few percent that is paid for by government. The majority of medical and scientific research conducted in this country is paid for exclusively or largely by the federal or state governments. New ideas and understanding are built on the research of others. That's called progress.
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Montreaux1991
06:07 PM on 02/25/2009
No one is asking for, nor does this have anything to do with FREE MEDICINE.
It's about ACCESS to the results of PUBLICLY FUNDED MEDICAL RESEARCH.