JACK ANDRAKA - Cancer Test

How Aaron Swartz paved way for Jack Andraka's revolutionary cancer test 

[excerpt from article]

(Jack Andraka's breakthrough pancreatic cancer test would have never come about were it not for access to online journals -- what Internet guru Aaron Swartz was promoting before his death. Andraka "religiously" used free online academic journals in the research because "in most online databases, articles cost about $35, and there are only about 10 pages.")

{That paragraph tells all.  My name is Vickie Barker, I've been an internet researcher since 1999.  Before that, I was many things.  But that time on the internet allowed me time to wake up.  What Jack Andraka is saying, among other things,is that facts and findings are there, they do exist, but it is very hard and expensive to retrieve the very limited information we could all benefit from.   It has been expensive and time consuming to verify what I have been learning over these past many years, but the evidence certainly supports the contention that We Have ALL Been Duped.}

Jack Andraka (Intel/ YouTube) 

Jack Andraka, the 15-year-old whiz kid behind a revolutionary new tool in cancer research, has many things in common with Aaron Swartz, the phenomenon at the center of a continuing online freedom debate in the US. 

Swartz was also just 15 when he helped co-develop RSS, a form of Web publication, that has enabled dissidents in China and the Middle East, North Africa region to circumvent censors. Andraka is on his way to revolutionizing the medical profession with a cost-effective, much less invasive test for early-stage pancreatic cancer and a number of other diseases (detailed in the video below).

“It'll be three to five years before it's on the market, both as a take home test and in doctor's offices,” the well-spoken high school student told The Vancouver Observer.

But Swartz and Andraka aren't only connected by their teenage prodigy.

Andraka used free online academic journals in the research that resulted in his invention.

“I used them religiously,” Andraka said, “Just because, in most online databases, articles cost about [US]$35, and there are only about 10 pages." 

“The public funds a lot of this research. Shouldn't the public have access to it?”

An online digital activist and developer, Aaron Swartz committed suicide earlier this month, weeks before the start of his trial, where he would face three decades in prison for allegedly “stealing” millions of pay-walled articles from Online academic service JSTOR to make them available to the public for free.

“I believe [Swartz's] actions were mostly justified,” Andraka said, “The public funded a lot of that research. It shouldn't be held inaccessible to the public.”

Swartz's best friend and colleague in many of his battles for free and open Internet access Ben Wikler agreed with Andraka.

“Poor and rich people pay taxes for the research that goes into these journals. Only those wealthy enough to pay for subscriptions or go to universities can reap the fruits of their funding... It reinforces fundamental social inequalities,” Wikler said, on the phone from Brooklyn.

Wikler's Canadian counterparts also say that publicly funded research are inherently the property of the public.

“Academic articles are created with public funds, within the public university system,” said open Internet advocate OpenMedia.ca's managing director Reilly Yeo.

“Most writers of these articles are never paid directly for their services. Academic articles should definitely be freely available - that's how we'll see the full potential of the Internet to level the playing field for access to knowledge.”

Footing the bill for book smarts

Still, some of the media published in the aftermath of Swartz's suicide has observed that service's like JSTOR's are labor and cost intensive, and that it is financially implausible to tear down pay walls.

JSTOR spokesperson Heidi McGregor told VO the company's total expenses for 2012 were $52.6 million, garnering a total revenue of $53.2 million. 

JSTOR is part of ITHAKA, a larger non-profit academic services organization that, McGregor estimated, employs between 250 to 300 people. 

“It's very important to understand there are a range of ways to cover costs [with academic journal databases] depending on what kind of organization you are and what you're trying to do,” McGregor said.

“Certain resource providers can underwrite costs through advertising, government funding or authors paying the price themselves – That happens in science. Authors are paying to make content available on the supply side, rather than on the demand side.”

But that's not the case for JSTOR.

“One thing to keep in mind is that JSTOR is more akin to a library or archive than a publisher. The notion that the content has been paid for is not really true. We have to cover costs in the same way that a library incurs costs. A library buys a book. They have a responsibility to create a catalogue. They pay to preserve the book and make sure that their copies are in shape,” she said.

Depending on JSTOR's agreement with the publishers who supply the work it catalogues, JSTOR may pay “25 cents on the dollar with our publishers. Whether they share funds with their authors depends on their agreement,” McGregor explained. 

McGregor feels people fail to understand how cost-intensive services like JSTOR are. 

“People like to talk about the concepts of things, but don't understand what it means to implement them.” 

Still, the JSTOR service is working to make more of its work open to the public.

“We are opening up articles today,” McGregor said, noting that with funding from libraries around the globe, there are half a million articles that unsubscribed users can register and read. A user can check a hand full out each week “in the same way they can check books out of a library,” she said.

Yet Wikler remains unconvinced that JSTOR can't offer articles free of charge for the public.

“I know there are a tangle of contracts and provisions and laws. That's all just a speck in the face of making human knowledge available to everybody,” he said. 

“When JSTOR launched in 1995, putting academic articles on the Net was a controversial proposition that they made headway on. In 2013, there shouldn't be any reason why academic articles shouldn't be for free. We should make sure that every person on Earth has access to the intellectual heritage of human kind.” 

Pondering new business models, Wikler suggested that “universities could make a consortium. The Obama administration could stipulate that research should be free after a certain period of time. Researchers could also start stipulating that there work be made available openly to the public.”

The legacy of two prodigies

“My research should serve as a testament to free online research (...) It was hard to get what I needed without the costs. People should take note and because of this project, we should make a move toward more inexpensive or free Online research,” Andraka said.

Wikler attempted to speak about his late friend's intent.

“Aaron would want all the Jack Andrakas to carry this torch forward now (…) He'd also say, don't accept the lie that the world has to be the way it is now,” Wikler said.

“I would love for JSTOR to be the biggest open research advocate. If they were lobbying for funding to get pay walls taken down, the world would applaud them (...) Aaron believed anyone could do what he did -- that if people thought seriously about their moral obligations, anyone could change the world. He'd want Andraka to do this for the rest of his life and others to follow suit. ”