And Of Course: 'Surprising' Openness And Sharing Of Data Leads To Advancements In Alzheimer's Research

from the well,-duh dept

I think everyone who reads Techdirt — including my parents — sent over this story today. The NY Times has an article about the rapid advancements in Alzheimer’s research after researchers agreed to immediately open up any data:

The key to the Alzheimer?s project was an agreement as ambitious as its goal: not just to raise money, not just to do research on a vast scale, but also to share all the data, making every single finding public immediately, available to anyone with a computer anywhere in the world.

No one would own the data. No one could submit patent applications, though private companies would ultimately profit from any drugs or imaging tests developed as a result of the effort.

This should hardly be surprising — except to those who insist that without the possibility of patents no research would be done on curing diseases. In fact, the only thing that should be surprising about this is the fact that anyone is surprised by it, or that anyone continues to insist patents are necessary in this kind of research. We’ve already seen how large groups of scientists sharing data leads to faster advancement in those fields, and how data that is locked up leads to slower advancement in research.

Thankfully, it appears that some folks are getting the right idea about this, and have set up a similar deal for research into Parkinson’s disease, and perhaps it can finally lead to a rethinking of patenting federally funded drug research and (dare we hope?) a rolling back of the disastrous Bayh-Dole Act, which resulted in this desire of universities to lock up basic research.

But the key results here highlight the same point many of us have made for years: openness and sharing of the underlying data allows overall advancement in the space to move at a faster rate (prior to this openness, research in the area had apparently stalled out a bit). And, even with the open sharing of data and the lack of patents, there are still plenty of incentives to do the research, because they know that there is plenty of money to be made in selling the actual treatments that come out of this.

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Comments on “And Of Course: 'Surprising' Openness And Sharing Of Data Leads To Advancements In Alzheimer's Research”

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Anonymous Coward says:

The risk of genetic predisposition to Alzheimer's is serious business.

Those with parents with Alzheimer’s can be genetically predisposed to have Alzheimer’s when they grow old themselves…!

So in the interest of surprising openness and sharing, do this for me- ask your parents if they remember telling you about the Alzheimer’s study. Then report your findings back here.

Hulser (profile) says:

Precedent or anomoly?

This is really good news, but something in the article made me realize there’s probably a long way to go before this attitude catches on…

“This one makes sense. The development of reliable and valid measures of Alzheimer’s disease requires such large science with such limited returns on the investment that it was in no one company’s interest to pursue it.”

Wait, just this one makes sense? I get the feeling that the person who said this really doesn’t think that being open with information and increased cooperation will work with many other kinds of research. Hopefully, the organizations who provide funding for researach, like the Michael J. Fox foundation, will demand this same type of openness for their studies after they see the results.

Mike Masnick (profile) says:

Re: Re: Re:3 We must test this theroy about rapid advancements in research.

More importantly, how do you not have a profile/Insider badge?

Mike…you don’t comp your parents?

Good point. Well, they so rarely comment. They did get a free (signed) copy of the book, as well as some hoodies, so they did okay… But, yeah, I’ll see about getting them insider accounts.

B. Nicholson (profile) says:

Theft is the problem, not the solution

The problem is that marauders determined to steal ideas hunt down thinkers and steal their ideas. The odd thing is that this is not illegal, it’s not even considered immoral!
Suppose you have an idea and post it on the internet. Some hunchback at a university takes it, writes it up, and publishes it as his/her own. Now, your idea is out there, true, but who cares? It’s the hunchback who gets the patent instead of jail time.
We need to imprison people who file fraudulent or false claims of any kind with the government. We need a tracking system.
I have provided more than 3 trillion dollars worth of economic enhancement to the USA. My ideas carry tens of thousands of high paying US jobs. Millions of American families have profited from my works. (e.g. HOPE Scholarships–college for millions, Avatar, Titanic, Inception, 6th Sense, Forrest Gump, Wag the Dog, Star Wars, E.T.) If I had one tenth of one percent of the profits that my ideas have provided to humanity, I would have my own lab and we could get some real progress made. As it stands now, I linger in squalor. I had to run an experiment with human blood in my back yard to discover the cause of atherosclerosis.
Is our society so broke that the best and brightest among us must languish in poverty, without hope, lost and forlorn?

Dark Helmet (profile) says:

Re: Theft is the problem, not the solution

Two things:

1st — If you have the resources at hand required to access the internet, you are not in poverty

2nd — I did some backchecking on you, Bubba. Are you intentionally that creepy or does it just come naturally to you?

vivaelamor (profile) says:

Re: Re: Theft is the problem, not the solution

“1st — If you have the resources at hand required to access the internet, you are not in poverty”

Subjective statement I know, but I’d point out that there are plenty of people (in the UK at least) who are on benefits only income and in substantial debt while still paying for broadband. I’d wager that there are less young people in poverty without internet access than without a land-line phone.

Anonymous Coward says:

I do not believe that Bayh-Dole is a “flawed” law in the sense that there are good and valid policy reasons underlying why it was crafted in the first place.

That said, I do believe that in far too many circumstances the law is being used in a manner for which it was not intended.

For example, it was not intended to turn universities into profit centers, with the inevitable result that public disclosure of research results can be delayed. Nor was it intended to turn our national laboratories (e.g., Sandia, Oak Ridge)into profit centers.

Based upon my experience, Bayh-Dole has had little, if any, impact upon private sector companies performing work under federal funding agreements. It is federal agencies and many public institutions who have latched on to the law and steered it in unintended directions.

John Doe says:

Big Pharma are (not surprizingly) more interested in treating your symptoms than curing your disease.
Afterall, you can treat someones symptoms their whole life, but you can only cure them once.

As amazing as this is, it is not an area where ‘the market will regulate itself’, medical research needs to be public domain if we actually want to cure rather than manage diseases.

Gene Cavanaugh (profile) says:

Technology advances

Good article, but again, too extreme. The truth isn’t at one extreme or the other, but, as with most things, in the middle.
Certainly, government funded research (or any research, IMO) should NOT have IP protections available, and the Bayh-Dole act proves it.
Even so, there are places where IP is very appropriate, and does advance the art, and I am proud to be an IP attorney in that area.

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