Researcher illegally shares millions of science papers free online to spread knowledge

[TargeT]

Every once in a while someone steps up and renews my faith in humanity.

This is exactly the mentality we need to start adopting,, less "mine" and more "ours". :Party:



A researcher in Russia has made more than 48 million journal articles - almost every single peer-reviewed paper every published - freely available online. And she's now refusing to shut the site down, despite a court injunction and a lawsuit from Elsevier, one of the world's biggest publishers.

For those of you who aren't already using it, the site in question is Sci-Hub, and it's sort of like a Pirate Bay of the science world. It was established in 2011 by neuroscientist Alexandra Elbakyan, who was frustrated that she couldn't afford to access the articles needed for her research, and it's since gone viral, with hundreds of thousands of papers being downloaded daily. But at the end of last year, the site was ordered to be taken down by a New York district court - a ruling that Elbakyan has decided to fight, triggering a debate over who really owns science.
"Payment of $32 is just insane when you need to skim or read tens or hundreds of these papers to do research. I obtained these papers by pirating them," Elbakyan told Torrent Freak last year. "Everyone should have access to knowledge regardless of their income or affiliation. And that’s absolutely legal."

If it sounds like a modern day Robin Hood struggle, that's because it kinda is. But in this story, it's not just the poor who don't have access to scientific papers - journal subscriptions have become so expensive that leading universities such as Harvard and Cornell have admitted they can no longer afford them. Researchers have also taken a stand - with 15,000 scientists vowing to boycott publisher Elsevier in part for its excessive paywall fees.

Don't get us wrong, journal publishers have also done a whole lot of good - they've encouraged better research thanks to peer review, and before the Internet, they were crucial to the dissemination of knowledge.

But in recent years, more and more people are beginning to question whether they're still helping the progress of science. In fact, in some cases, the 'publish or perish' mentality is creating more problems than solutions, with a growing number of predatory publishers now charging researchers to have their work published - often without any proper peer review process or even editing.

"They feel pressured to do this," Elbakyan wrote in an open letter to the New York judge last year. "If a researcher wants to be recognised, make a career - he or she needs to have publications in such journals."

That's where Sci-Hub comes into the picture. The site works in two stages. First of all when you search for a paper, Sci-Hub tries to immediately download it from fellow pirate database LibGen. If that doesn't work, Sci-Hub is able to bypass journal paywalls thanks to a range of access keys that have been donated by anonymous academics (thank you, science spies).

This means that Sci-Hub can instantly access any paper published by the big guys, including JSTOR, Springer, Sage, and Elsevier, and deliver it to you for free within seconds. The site then automatically sends a copy of that paper to LibGen, to help share the love.

It's an ingenious system, as Simon Oxenham explains for Big Think:

"In one fell swoop, a network has been created that likely has a greater level of access to science than any individual university, or even government for that matter, anywhere in the world. Sci-Hub represents the sum of countless different universities' institutional access - literally a world of knowledge."

That's all well and good for us users, but understandably, the big publishers are pissed off. Last year, a New York court delivered an injunction against Sci-Hub, making its domain unavailable (something Elbakyan dodged by switching to a new location), and the site is also being sued by Elsevier for "irreparable harm" - a case that experts are predicting will win Elsevier around $750 to $150,000 for each pirated article. Even at the lowest estimations, that would quickly add up to millions in damages.

But Elbakyan is not only standing her ground, she's come out swinging, claiming that it's Elsevier that have the illegal business model.

"I think Elsevier’s business model is itself illegal," she told Torrent Freak, referring to article 27 of the UN Declaration of Human Rights, which states that "everyone has the right freely to participate in the cultural life of the community, to enjoy the arts and to share in scientific advancement and its benefits".

She also explains that the academic publishing situation is different to the music or film industry, where pirating is ripping off creators. "All papers on their website are written by researchers, and researchers do not receive money from what Elsevier collects. That is very different from the music or movie industry, where creators receive money from each copy sold," she said.

Elbakyan hopes that the lawsuit will set a precedent, and make it very clear to the scientific world either way who owns their ideas.

"If Elsevier manages to shut down our projects or force them into the darknet, that will demonstrate an important idea: that the public does not have the right to knowledge," she said. "We have to win over Elsevier and other publishers and show that what these commercial companies are doing is fundamentally wrong."

To be fair, Elbakyan is somewhat protected by the fact that she's in Russia and doesn't have any US assets, so even if Elsevier wins their lawsuit, it's going to be pretty hard for them to get the money.

Still, it's a bold move, and we're pretty interested to see how this fight turns out - because if there's one thing the world needs more of, it's scientific knowledge. In the meantime, Sci-Hub is still up and accessible for anyone who wants to use it, and Elbakyan has no plans to change that anytime soon.


http://www.sciencealert.com/this-woman-has-illegally-uploaded-millions-of-journal-articles-in-an-attempt-to-open-up-science






Interested in doing it? here's a quick walk through that will get you started:

HQ3h3eOKO84


Download, Share, empower! because...... SCIENCE!

[LivioRazlo]

I just found out about Sci-hub through an INTP Facebook group. Really interesting and I fully support their decision to break the banks of the scientific journal companies.

[TargeT]

I just found out about Sci-hub through an INTP Facebook group. Really interesting and I fully support their decision to break the banks of the scientific journal companies.

I'm a science hobbyist & never knew about this.. haha I always just went for Torrents when I wanted papers (and couldn't always get them) , this will be so much easier! There are some REALLY fascinating papers out there & the TRUE genius is in the correlation of different papers... the synergy is where the magic is ;) (like mixing light/sound at resonant frequencies for crazy interference effects... fascinating stuff).

[Eram]

the TRUE genius is in the correlation of different papers... the synergy is where the magic is ;).

Yes!!!

Science has been way to compartmentalized for far too long.
We need a new generation of people who aim at bringing it all together.

[soul]

In first year at university I had a professor who dedicated one lecture to show the class sources of information for their later works etc.

He was like: how come 90% of the students who ask me for advice on how to gain information for their papers doesn't know about google scholar.
Since I'm from Poland you can basically translate a couple of scientific works from there and get your engineering degree ;)

[Constance]

I just found out about Sci-hub through an INTP Facebook group. Really interesting and I fully support their decision to break the banks of the scientific journal companies.

I'm a science hobbyist & never knew about this.. haha I always just went for Torrents when I wanted papers (and couldn't always get them) , this will be so much easier! There are some REALLY fascinating papers out there & the TRUE genius is in the correlation of different papers... the synergy is where the magic is ;) (like mixing light/sound at resonant frequencies for crazy interference effects... fascinating stuff).

Thank so much TargeT for this!! :heart: :bowing: Absolutely spectacular

Indeed, synergy is the key!! I also use synergy in my diet for the same reasons.

Thanks again!!!

[Constance]

the TRUE genius is in the correlation of different papers... the synergy is where the magic is ;).

Yes!!!

Science has been way to compartmentalized for far too long.
We need a new generation of people who aim at bringing it all together.

I know someone who has already written a book that does exactly this and added to the mix, spirituality. If you want their details please p.m me because I don't want to spam here.
much love to you,
Breal

[gnostic9]

Thanks for the information, good to know. The link below has some information on sci-hub, book-fi and others, about court case, and domain name changes, and url changes. copyright always bugged me!

https://torrentfreak.com/sci-hub-and-libgen-resurface-after-being-shut-down-151121/

[Citizen No2]

Target wrote:


Every once in a while someone steps up and renews my faith in humanity.

This is exactly the mentality we need to start adopting,, less "mine" and more "ours".

I tell you what pal, what a needed gift this is for me. Awesome find man.


Regards.

[Bubu]

I dont get much from books rather from my own research because of the payment barriers. I hope I will have luck in finding that rare book of truth. most books out there are crap books.

[JChombre]

Every once in a while someone steps up and renews my faith in humanity.

This is exactly the mentality we need to start adopting,, less "mine" and more "ours". :Party:



A researcher in Russia has made more than 48 million journal articles - almost every single peer-reviewed paper every published - freely available online. And she's now refusing to shut the site down, despite a court injunction and a lawsuit from Elsevier, one of the world's biggest publishers.

For those of you who aren't already using it, the site in question is Sci-Hub, and it's sort of like a Pirate Bay of the science world. It was established in 2011 by neuroscientist Alexandra Elbakyan, who was frustrated that she couldn't afford to access the articles needed for her research, and it's since gone viral, with hundreds of thousands of papers being downloaded daily. But at the end of last year, the site was ordered to be taken down by a New York district court - a ruling that Elbakyan has decided to fight, triggering a debate over who really owns science.
"Payment of $32 is just insane when you need to skim or read tens or hundreds of these papers to do research. I obtained these papers by pirating them," Elbakyan told Torrent Freak last year. "Everyone should have access to knowledge regardless of their income or affiliation. And that’s absolutely legal."

If it sounds like a modern day Robin Hood struggle, that's because it kinda is. But in this story, it's not just the poor who don't have access to scientific papers - journal subscriptions have become so expensive that leading universities such as Harvard and Cornell have admitted they can no longer afford them. Researchers have also taken a stand - with 15,000 scientists vowing to boycott publisher Elsevier in part for its excessive paywall fees.

Don't get us wrong, journal publishers have also done a whole lot of good - they've encouraged better research thanks to peer review, and before the Internet, they were crucial to the dissemination of knowledge.

But in recent years, more and more people are beginning to question whether they're still helping the progress of science. In fact, in some cases, the 'publish or perish' mentality is creating more problems than solutions, with a growing number of predatory publishers now charging researchers to have their work published - often without any proper peer review process or even editing.

"They feel pressured to do this," Elbakyan wrote in an open letter to the New York judge last year. "If a researcher wants to be recognised, make a career - he or she needs to have publications in such journals."

That's where Sci-Hub comes into the picture. The site works in two stages. First of all when you search for a paper, Sci-Hub tries to immediately download it from fellow pirate database LibGen. If that doesn't work, Sci-Hub is able to bypass journal paywalls thanks to a range of access keys that have been donated by anonymous academics (thank you, science spies).

This means that Sci-Hub can instantly access any paper published by the big guys, including JSTOR, Springer, Sage, and Elsevier, and deliver it to you for free within seconds. The site then automatically sends a copy of that paper to LibGen, to help share the love.

It's an ingenious system, as Simon Oxenham explains for Big Think:

"In one fell swoop, a network has been created that likely has a greater level of access to science than any individual university, or even government for that matter, anywhere in the world. Sci-Hub represents the sum of countless different universities' institutional access - literally a world of knowledge."

That's all well and good for us users, but understandably, the big publishers are pissed off. Last year, a New York court delivered an injunction against Sci-Hub, making its domain unavailable (something Elbakyan dodged by switching to a new location), and the site is also being sued by Elsevier for "irreparable harm" - a case that experts are predicting will win Elsevier around $750 to $150,000 for each pirated article. Even at the lowest estimations, that would quickly add up to millions in damages.

But Elbakyan is not only standing her ground, she's come out swinging, claiming that it's Elsevier that have the illegal business model.

"I think Elsevier’s business model is itself illegal," she told Torrent Freak, referring to article 27 of the UN Declaration of Human Rights, which states that "everyone has the right freely to participate in the cultural life of the community, to enjoy the arts and to share in scientific advancement and its benefits".

She also explains that the academic publishing situation is different to the music or film industry, where pirating is ripping off creators. "All papers on their website are written by researchers, and researchers do not receive money from what Elsevier collects. That is very different from the music or movie industry, where creators receive money from each copy sold," she said.

Elbakyan hopes that the lawsuit will set a precedent, and make it very clear to the scientific world either way who owns their ideas.

"If Elsevier manages to shut down our projects or force them into the darknet, that will demonstrate an important idea: that the public does not have the right to knowledge," she said. "We have to win over Elsevier and other publishers and show that what these commercial companies are doing is fundamentally wrong."

To be fair, Elbakyan is somewhat protected by the fact that she's in Russia and doesn't have any US assets, so even if Elsevier wins their lawsuit, it's going to be pretty hard for them to get the money.

Still, it's a bold move, and we're pretty interested to see how this fight turns out - because if there's one thing the world needs more of, it's scientific knowledge. In the meantime, Sci-Hub is still up and accessible for anyone who wants to use it, and Elbakyan has no plans to change that anytime soon.


http://www.sciencealert.com/this-woman-has-illegally-uploaded-millions-of-journal-articles-in-an-attempt-to-open-up-science






Interested in doing it? here's a quick walk through that will get you started:

HQ3h3eOKO84


Download, Share, empower! because...... SCIENCE!

Dear TargeT,

A million thanks for this information. I intent to use this free source of information in about two months when I will be writing a grant proposal. Three years ago, I wrote a proposal and I spent a lot of money buying several published articles online that I needed for this proposal. I paid $30 for each online article. I'm getting even this time.;)
Many blessings to you.

JC

[Citizen No2]

Babu wrote:



I dont get much from books rather from my own research because of the payment barriers. I hope I will have luck in finding that rare book of truth. most books out there are crap books.

You ain't looking for the right books Brother.


Regards.

[Hervé]

Meet the Robin Hood of Science
(http://bigthink.com/neurobonkers/a-pirate-bay-for-science)
by Simon Oxenham (http://bigthink.com/users/simonoxenham) 1 day ago


http://www.sott.net/image/s15/301892/large/Screen_shot_2016_02_13_at_12_3.jpg

The tale of how one researcher has made nearly every scientific paper ever published available for free to anyone, anywhere in the world.

On the evening of November 9th, 1989, the Cold War came to a dramatic end with the fall of the Berlin Wall. Four years ago another wall began to crumble, a wall that arguably has as much impact on the world as the wall that divided East and West Germany. The wall in question is the network of paywalls that cuts off tens of thousands of students and researchers around the world, at institutions that can’t afford expensive journal subscriptions, from accessing scientific research.

On September 5th, 2011, Alexandra Elbakyan, a researcher from Kazakhstan, created Sci-Hub, a website that bypasses journal paywalls, illegally providing access to nearly every scientific paper ever published immediately to anyone who wants it. The website works in two stages, firstly by attempting to download a copy from the LibGen database of pirated content, which opened its doors to academic papers in 2012 and now contains over 48 million scientific papers. The ingenious part of the system is that if LibGen does not already have a copy of the paper, Sci-hub bypasses the journal paywall in real time by using access keys donated by academics lucky enough to study at institutions with an adequate range of subscriptions. This allows Sci-Hub to route the user straight to the paper through publishers such as JSTOR, Springer, Sage, and Elsevier. After delivering the paper to the user within seconds, Sci-Hub donates a copy of the paper to LibGen for good measure, where it will be stored forever, accessible by everyone and anyone.


http://www.sott.net/image/s15/301893/large/Screen_shot_2016_02_13_at_12_3.jpg

This was a game changer. Before September 2011, there was no way for people to freely access paywalled research en masse; researchers like Elbakyan were out in the cold. Sci-Hub is the first website to offer this service and now makes the process as simple as the click of a single button.

As the number of papers in the LibGen database expands, the frequency with which Sci-Hub has to dip into publishers’ repositories falls and consequently the risk of Sci-Hub triggering its alarm bells becomes ever smaller. Elbakyan explains,
“We have already downloaded most paywalled articles to the library ... we have almost everything!” This may well be no exaggeration. Elsevier, one of the most prolific and controversial scientific publishers in the world, recently alleged in court that Sci-Hub is currently harvesting Elsevier content at a rate of thousands of papers per day. Elbakyan puts the number of papers downloaded from various publishers through Sci-Hub in the range of hundreds of thousands per day, delivered to a running total of over 19 million visitors.

The efficiency of the system is really quite astounding, working far better than the comparatively primitive modes of access given to researchers at top universities, tools that universities must fork out millions of pounds for every year. Users now don’t even have to visit the Sci-Hub website at all; instead, when faced with a journal paywall they can simply take the Sci-Hub URL and paste it into the address bar of a paywalled journal article immediately after the “.com” or “.org” part of the journal URL and before the remainder of the URL. When this happens, Sci-Hub automatically bypasses the paywall, taking the reader straight to a PDF without the user ever having to visit the Sci-Hub website itself.

If, at first pass the network fails to gain access to the paper, the system automatically tries different institutions’ credentials until it gains access. In one fell swoop, a network has been created that likely has a greater level of access to science than any individual university, or even government for that matter, anywhere in the world. Sci-Hub represents the sum of countless different universities' institutional access — literally a world of knowledge. This is important now more than ever in a world where even Harvard University can no longer afford to pay skyrocketing academic journal subscription fees (http://www.theguardian.com/science/2012/apr/24/harvard-university-journal-publishers-prices), while Cornell axed many of its Elsevier subscriptions over a decade ago (http://www.nature.com/nature/journal/v426/n6964/full/426217a.html). For researchers outside the US' and Western Europe’s richest institutions, routine piracy has long been the only way to conduct science, but increasingly the problem of unaffordable journals is coming closer to home.

This was the experience of Elbakyan herself, who studied in Kazakhstan University and just like other students in countries where journal subscriptions are unaffordable for institutions, was forced to pirate research in order to complete her studies.

Elbakyan told me,
“Prices are very high, and that made it impossible to obtain papers by purchasing. You need to read many papers for research, and when each paper costs about 30 dollars, that is impossible.”
http://www.sott.net/image/s15/301895/large/Alexandra_Elbakyan_photo.jpg

So how did researchers like Elbakyan ever survive before Sci-Hub?

Elbakyan explains,

“Before Sci-Hub, this problem was solved manually for years! For example, students would go to an online forum where other researchers communicate, and request papers there; other people would respond to the request.” This practice is widespread even today, with researchers even at rich Western institutions now routinely forced to email the authors of papers directly, asking for a copy by email, wasting the time of everyone involved and holding back the progress of research in the process.

Today many researchers use the #icanhazpdf hashtag on Twitter to ask other benevolent researchers to download paywalled papers for them, a practice Elbakyan describes as “very archaic,” pointing out that “especially in Russia, the Sci-Hub project started a new era in how research work is done. Now, the requests for information are solved by machines, not the hands of other researchers. Automation made the process of solving requests very effective. Before, hundreds of requests were solved per day; Sci-Hub turned these numbers into hundreds of thousands.”

Last year, New York District Court Judge Robert W. Sweet delivered a preliminary injunction against Sci-Hub, making the site's former domain unavailable. The injunction came in the run-up to the forthcoming case of Elsevier vs. Sci-Hub, a case Elsevier is expected to win — due, in no small part, because no one is likely to turn up on U.S. soil to initiate a defence. Elsevier alleges “irreparable harm,” based on statutory damages of $750-$150,000 for each pirated work. Given that Sci-Hub now holds a library of over 48 million papers Elsevier’s claim runs into the billions, but can be expected to remain hypothetical both in theory and in practice.

Elsevier is the world’s largest academic publisher and by far the most controversial. Over 15,000 researchers have vowed to boycott the p (http://thecostofknowledge.com/)ublisher (http://thecostofknowledge.com/) for charging “exorbitantly high prices” and bundling expensive, unwanted journals with essential journals, a practice that allegedly is bankrupting university libraries. Elsevier also supports SOPA and PIPA, which the researchers claim threatens to restrict the free exchange of information. Elsevier is perhaps most notorious for delivering takedown notices to academics, demanding them to take their own research published with Elsevier off websites like Academia.edu.

The movement against Elsevier has only gathered speed over the course of the last year with the resignation of 31 editorial board members from the Elsevier journal Lingua, who left in protest to set up their own open-access journal, Glossa (http://www.wired.com/2015/11/editors-of-the-journal-lingua-protest-quit-in-battle-for-open-access/). Now the battleground has moved from the comparatively niche field of linguistics to the far larger field of cognitive sciences. Last month, a petition of over 1,500 cognitive science researchers called on the editors of the Elsevier journal Cognition to demand Elsevier offer “fair open access” (http://petitions.moveon.org/sign/support-fair-open-access). Elsevier currently charges researchers $2,150 per article if researchers wish their work published in Cognition to be accessible by the public, a sum far higher than the charges that led to the Lingua mutiny.

In a letter to the judge (https://torrentfreak.com/images/sci-hub-reply.pdf), Elbakyan defended her decision not on legal grounds, but on ethical grounds.

Elbakyan writes:

“When I was a student in Kazakhstan University, I did not have access to any research papers. These papers I needed for my research project. Payment of 32 dollars is just insane when you need to skim or read tens or hundreds of these papers to do research. I obtained these papers by pirating them. Later I found there are lots and lots of researchers (not even students, but university researchers) just like me, especially in developing countries. They created online communities (forums) to solve this problem. I was an active participant in one of such communities in Russia. Here anyone who needs a research paper, but cannot pay for it, could place a request and other members who can obtain the paper will send it for free by email. I could obtain any paper by pirating it, so I solved many requests and people always were very grateful for my help. After that, I created Sci-Hub.org, a website that simply makes this process automatic and the website immediately became popular.

It is true that Sci-Hub collects donations, however we do not pressure anyone to send them. Elsevier, in contrast, operates by racket: If you do not send money, you will not read any papers. On my website, any person can read as many papers as they want for free, and sending donations is their free will. Why can Elsevier not work like this, I wonder?” In her letter to Sweet, Elbakyan made a point that will likely come as a shock to many outside the academic community: Researchers and universities don’t earn a single penny from the fees charged by publishers such as Elsevier for accepting their work, while Elsevier has an annual income over a billion U.S. dollars. Elbakyan explains:

“I would also like to mention that Elsevier is not a creator of these papers. All papers on their website are written by researchers, and researchers do not receive money from what Elsevier collects. That is very different from the music or movie industry, where creators receive money from each copy sold. But the economics of research papers is very different. Authors of these papers do not receive money. Why would they send their work to Elsevier then? They feel pressured to do this, because Elsevier is an owner of so-called "high-impact” journals. If a researcher wants to be recognized, make a career — he or she needs to have publications in such journals.”
This is the Catch-22. Why would any self-respecting researcher willingly hand over, for nothing, the copyright to their hard work to an organization that will profit from the work by making the keys prohibitively expensive to the few people who want to read it? The answer is ultimately all to do with career prospects and prestige. Researchers are rewarded in jobs and promotions for publishing in high-ranking journals such as Nature.

Ironically, it is becoming increasingly common for researchers to be unable to access even their own published work, as wealthier and wealthier universities join the ranks of those unable to pay rising subscription fees. Another tragic irony is the fact that high-impact journals can actually be less reliable (http://journal.frontiersin.org/article/10.3389/fnhum.2013.00291/full#B118) than lesser-ranked journals, due to their requirements that researchers publish startling results, which can lead to a higher incidence of fraud and bad research practices.

But things are changing. Researchers are increasingly fighting back against the problem of closed-access publishers and now funders of research such as the Wellcome Trust are increasingly joining the battle by instituting open access policies banning their researchers from publishing in journals with closed access. But none of this helps researchers who need access to science right now.

For her part, Elbakyan isn’t giving up the fight, in spite of the growing legal pressure, which she feels is totally unjust. When I asked what her next move would be, Elbakyan said, “I do not want Elsevier to learn about our plans,” but assured me she was not put off by the recent court order, defiantly stating “we are not going to stop our activities, and plan to expand our database.”


http://www.sott.net/image/s15/301901/large/bird_cage.jpg

Already, only days after the court injunction blocking Sci-Hub’s old domain, Sci-Hub was back online at a new domain accessible worldwide. Since the court judgment, the website has been upgraded from a barebones site that existed entirely in Russian to a polished English version proudly boasting a library of 48 million papers, complete with a manifesto in opposition to copyright law. The bird is out of its cage, and if Elsevier still thinks it can put it back, they may well be sorely mistaken.


========================================

:clapping:

[Hervé]

The above is another facet of that hoarding of knowledge to benefit the select few working in/for the system of "financed" universities as well as a way to keep anyone else "dumb-downed" as touched upon here (http://projectavalon.net/forum4/showthread.php?88832-Sociopaths-in-the-medical-field&p=1045967&viewfull=1#post1045967) <---

[TargeT]

Finally, we have the confluence of people with access and ability to share knowledge + personal situations that encourage it (stage 4 cancer can slap you out of your little world and broaden your view).

Hopefully this trend continues, it can only benefit us all!


Genetic Testing Company Wants To End 'Data Hoarding', Spends $20 Million To Put 10,000 Genomes In The Public Domain
Recently, we wrote about how Sage Bionetworks was sharing data it collected during a clinical study. That was a laudable move, but made much easier by the non-profit nature of the research organization involved. Here's a sign that openness is spreading even to commercial research, as reported by The New York Times:

In an unusual move, a leading genetic testing company is putting genetic information from the people it has tested into the public domain, a move the company says could make a large trove of data available to researchers looking for genes linked to various diseases.

The company, Ambry Genetics, is expected to announce on Tuesday that it will put information from 10,000 of its customers into a publicly available database called AmbryShare.

The AmbryShare site offers the following explanation for this generosity:

AmbryShare is our commitment to end data hoarding by breaking the mold and restoring the balance. We are sharing one of the largest genome (exome) disease databases, containing aggregated anonymous data from 10,000+ human genome(s). This data is estimated to triple our collective knowledge of genetics and many human diseases.

With your help, we can provide enough public data that there will be no reason for others not to share. If everyone shares, we can learn and understand faster. With this, treatments and cures will come.

As the New York Times article points out, 10,000 exomes -- essentially, the 1% of the genome that contains the instructions for building the body's proteins -- is not a huge number, but Ambry Genetics hopes to add data from as many as 200,000 customers a year to the database. So far it has spent $20 million on the project. In part, it has been able to bear that cost because of the key Supreme Court decision which struck down Myriad Genetics' patents on genetic testing. That cleared the way for other companies to make money by offering the tests -- including Ambry Genetics.

Two other factors helped the company choose sharing over "data hoarding". First, Ambry Genetics is privately held and majority owned by Charles Dunlop, its founder and chief executive, and his family. Secondly, Dunlop has a very personal reason for wanting to make researchers' access to the genomic data as easy as possible:

"I’ve got Stage 4 cancer myself," he said, referring to advanced prostate cancer that is in remission. "I don’t want to wait an extra day."

As more and more people are coming to understand, the best way to accelerate research and find new treatments and cures, is to open things up, to the fullest extent possible.
https://www.techdirt.com/articles/20160310/08573833858/genetic-testing-company-wants-to-end-data-hoarding-spends-20-million-to-put-10000-genomes-public-domain.shtml