Mardi Gras morning I read the new article from the Chronicle of Higher Education about Aaron Swartz’s death and memorial service.
New, Jake. Memorials for Aaron Swartz Turn to Discussion of How to Honor His Legacy. Chronicle of Higher Education February 10, 2013 http://chronicle.com/article/Moving-From-Sadness-to-Reform/137249/
Then a reader of this blog sent me a message asking me to blog more about this issue. That’s hard. I had to think about it a while, and have been working on various drafts of this post ever since. What I came up with is connecting Aaron’s mission and open access to what we gain, both potentially and actually, from making content available to other youth. This is because I had a very interesting conversation on Twitter Sunday evening with Jack Andraka, as part of the broader Health Care Social Media chat (#HCSM). If you don’t know Jack, read on. But first, a bit more about Aaron.
The HCSM chat started with an extremely active and powerful conversation about paywalls. Paywalls means, in this case, a situation where information or content that you want or need is unavailable to you until you pay money for it. Basically, the information is held hostage. This is not always a bad thing, and sometimes can actually increase safety of the audience, depending on what the content is. When it becomes questionable is when the content is educational, when the information is needed for the progress of helpful science or clinical care, is needed for safety of a community, is being used to shape policy or law that will impact on a community, comes from research paid for with public funds, or related uses and situations. There are many important conversations going on around use about when is it ethically appropriate to restrict access to information, for whom, for what types of information, and under what circumstances. Aaron Swartz had very strong opinions on this, which is ultimately what triggered the chain of events leading to his demise. Here is a small part of what Aaron had to say about this.
“Those with access to these resources — students, librarians, scientists — you have been given a privilege. You get to feed at this banquet of knowledge while the rest of the world is locked out. But you need not — indeed, morally, you cannot — keep this privilege for yourselves. You have a duty to share it with the world. And you have: trading passwords with colleagues, filling download requests for friends.”
Swartz, Aaron. Guerilla Open Access Manifesto. http://ia600808.us.archive.org/17/items/GuerillaOpenAccessManifesto/Goamjuly2008.pdf
Please note that the behaviors he describes — trading passwords, and filling download requests for friends — are illegal based upon the contracts signed by our institutions and libraries with the publishers of the journals and electronic resources. Aaron’s argument was that those contracts were unethical. Beyond unethical, actually, in that the lack of access to critical information is ultimately destructive to the entire human race and the survival of the species, in that this lack delays and prevents needed discoveries, solutions to the problems that threaten the species and life on this world. A broad scope for the argument, but there is substance to it. Yes, there are problems with simply making all information available to anyone, but there are also solutions for many of those problems and refinements to the who/what/what/when/why/how questions information access. Those are things we can work out.
For today, I want to let you see part of the story Jack Andraka shared with us last Sunday, about how paywalls impacted on his research. Here’s the conversation, which I have taken the liberty of embroidering with a few resources and links and videos (and there are a LOT more where these came from, especially the videos). To start with, WHO is Jack Andraka?
Jack is 16 years old. Jack was at the State of the Union address as the guest of President Obama. Why? Because Jack has developed a new test for diagnosing pancreatic cancer, a test that is more accurate (~100%) and faster (168x), and cheaper than anything we already have (26,000x, yes, really). This is critical simply because, as with so many other cancers, early diagnosis improves survival, DRASTICALLY. (Hey, Jack? Next time, look at ovarian cancer, please. KThxBai. Oh, wait. The test you already developed might work. Oh, and lung cancer, too? Awesome!)
You Don’t Know Jack
You Don’t Know Jack (by Morgan Spurlock): http://vimeo.com/56769793#at=0
Jack has won a bunch of awards for this: Intel® International Science and Engineering Fair® 2012: Gordon E. Moore Award; MIT Think; Smithsonian American Ingenuity Award.
Young Innovator Achieves Childhood Dream at Intel ISEF: http://www.youtube.com/watch?v=pmVzs3-GNBc
He’s given TEDx talks. Lots of them.
Jack Andraka: Detecting pancreatic cancer… at 15: http://www.youtube.com/watch?v=Nq4x8C6Dcf8
For A World Without Cancer : Jack Andraka at TEDxOrangeCoast: http://www.youtube.com/watch?v=r55a0FapF2M
My 3 Cents 0n Cancer: Jack Andraka at TEDxSanJoseCAWomen: http://www.youtube.com/watch?v=n9yuAhusVts
Inventing a Low-Cost Test for Cancer at Age 15: Jack Andraka at TEDxMaryland: http://www.youtube.com/watch?v=VehHPwAVL9g
No surprise, he’s been in the news a bit.
Upbin, Bruce. Wait, Did This 15-Year-Old From Maryland Just Change Cancer Treatment? Forbes 6/18/2012 @ 9:08AM http://www.forbes.com/sites/bruceupbin/2012/06/18/wait-did-this-15-year-old-from-maryland-just-change-cancer-treatment/
Nosta, John. Cancer, Innovation and a Boy Named Jack. Forbes 2/01/2013 @ 11:50AM. http://www.forbes.com/sites/johnnosta/2013/02/01/cancer-innovation-and-a-boy-named-jack/
Tucker, Abigail. Jack Andraka, the Teen Prodigy of Pancreatic Cancer. Smithsonian magazine, December 2012. http://www.smithsonianmag.com/science-nature/Jack-Andraka-the-Teen-Prodigy-of-Pancreatic-Cancer-179996151.html
BBC: US teen invents advanced cancer test using Google. BBC 20 August 2012 Last updated at 19:34ET. http://www.bbc.co.uk/news/magazine-19291258
Jack will be the first one to tell you he could not have done this without open access research articles. And he’ll also tell you about all the barriers and struggles he had when the information he needed wasn’t available in open access journals. So, there we get to the question of open access. Time for Jack to speak for himself. And that will happen in part two of this post.