Letter from CC Superhero Josh Sommer of the Chordoma Foundation
Allison Domicone, December 22nd, 2010
“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.