open science
Letter from CC Superhero Josh Sommer of the Chordoma Foundation
Josh Sommer
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“I’m in a race; a race to outrun a rare and deadly form of bone cancer called chordoma, with an average survival of 7 years. To find a cure, there is a lot that needs to happen sequentially, so to win the race, I need science to move quickly. Fortunately, uncanny new technologies in genomics, computing, synthetic biology, etc. have put cures for virtually any disease within the realm of possibility. Unfortunately, the way we practice science is not designed to move on the timescale of an individual’s disease.
Despite all of the technological advances that have been made in recent years, it still takes on average 1-3 years for results to be transmitted from one lab to the next; it still takes months or years for materials and data to be transferred between institutions; and untold masses of observations and creations never get shared at all. It’s no wonder, then, why it takes decades for discoveries to be translated into new treatments, and why the hurdles are often just too large to overcome for small-market diseases like chordoma.
For anyone affected, or whose loved one is affected, by a life threatening disease, this is simply intolerable. Think about it: in the very recent past, humankind has developed the tools and know-how to cure disease, yet we are stifled from maximizing the potential benefit of these new tools by social and legal systems that evolved in a bygone era. This has to change.
But let’s be realistic. Despite the fact that our scientific enterprise is not optimized for speed, it does have many virtues. And traditions such as academic tenure, peer review, intellectual property, and shareholder return are not going away any time soon – nor should they, necessarily. If we can sequence a genome in the course of a week, surely we can find sensible solutions to enable the data to be shared.
Creative Commons is leading the charge to find these solutions. By helping researchers make data open and available, by streamlining the material transfer process, and by uncovering and integrating data from various stakeholders, Creative Commons is grease to the wheels of science. It is a source of hope to me in the race to outrun my disease. It is a means to maximize our collective investment in research. That’s why I support Creative Commons, and why if there’s a disease you’d like to see cured, I urge you to give whole-heartedly to Creative Commons as well.”
Josh Sommer is the executive director of the Chordoma Foundation, which he co-founded with his mother, Dr. Simone Sommer, after he was diagnosed with a clival chordoma in 2006. He believes that patients should play an active role in bringing about treatments for their own conditions, and that patients represent a largely untapped source of funding, energy, and know-how in the treatment development process. Follow Josh on Twitter.
No Comments »science@creativecommons T-shirts now available in the CC store!
Science@creativecommons by Creative Commons / CC BY
November has been an exciting month for science at Creative Commons. Earlier this month we hosted a Creative Commons Salon in San Francisco on the promises and pitfalls of personalized medicine, which you can now watch online. We met a matching giving challenge by Hindawi, the open access scholarly journal publisher (disciplines from neuroscience to pharmacology), who doubled $3000 in donations to our annual fundraising campaign. We also saw BioMed Central, the world’s largest OA publisher, provide in-kind support for our fundraising campaign.
The icing on the cake is the most recent addition to our CC Store: this super-cool science-themed CC shirt, for which the world-famous XKCD was gracious enough to let us re-use a variation on a classic cartoon. Many of you may already read and enjoy the delightful webcomic of “romance, sarcasm, math, and language” which is under a CC BY-NC license. Now you can show your love for Creative Commons and science at the same time by buying one of these t-shirts, available for $20 over at the CC store.
Huge thanks to XKCD for being such a wonderful and creative member of the CC community, and for freely sharing that creativity with the world.
At Creative Commons, we see a lot of potential for bringing open access to the world of science, whether it pertains to genomics research, scholarly journal publishing, or unraveling the mysteries of the universe.
If you love science as much as we do, then hurry over to the CC Store and get your limited edition shirt today!
No Comments »Open Education and Open Science in Poland
Two very important conferences were held in Warsaw earlier this month (and late last month): “Open Educational Resources in Poland” (23 April) and “Open Science in Poland” (5 May). Alek Tarkowski, Public Lead of Creative Commons Poland, elaborates on the open education workshops held at each conference, one of which was led by ccLearn’s Ahrash Bissell:
“Two practical workshops on open education were organized by the Coalition for Open Education (KOED) in coincidence with two conferences taking place in Warsaw in April and May 2009: the conference on open education on 23rd of April 2009 and the conference on open science on 6th of May 2009. The first workshop, conducted by Susan d’Antoni from UNESCO and Richard Baraniuk from the Connexions project at Rice University, provided an overview of practical issues tied to open education, such as community building, IT tools and development strategies. The second workshop, led by Ahrash Bissell from ccLearn, focused on open licensing issues.
The two workshops were attended by a dozen representatives of NGOs active in the field of education and culture, as well as representatives from the Ministry of Education. Most important, they provided an opportunity for people working with open educational projects or considering starting such a project to meet and network.
As a result of the project, the Coalition for Open Education hopes to increase its number of member institutions, as well as enable the growth of open educational projects in Poland.”
For information on the conferences themselves, check out Alek’s detailed reports for both.
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