openness and participation in science.

Last week I watched the film Lorenzo's Oil, in which a boy develops a disease called adrenoleukodystrophy.  The disease is rare, and the boy's parents are told that there is no hope.  They take matters into their own hands, informing themselves and eventually, finding a cure.  It was a remarkable film and many times as I watched it, the phrase "open science" came to my mind.  I had read that phrase for, admittedly, the first time in Digital Civilization class, and I found an article that defines Open Science (the complete article is found at http://www.openscience.org/blog/?p=269).  The author says that the four fundamental goals are:

• Transparency in experimental methodology, observation, and collection of data.
• Public availability and reusability of scientific data.
• Public accessibility and transparency of scientific communication.
• Using web-based tools to facilitate scientific collaboration.

That sounds like openness, right?  It also sounds like information and participation, to be sure.  While I don't profess to know a great deal about the scientific process, I'm glad to see that science is taking the same route as open-source software; as one comment states, "Open-source software...is popular not so much because it is open/free but mostly because it is better than closed-source."  Open is better.

In Lorenzo's Oil, the scientists are made to be the bad guys who have secrets they're not willing to divulge.  The film was undoubtedly one-sided because it was much more engaging that way, and I understand that scientists play by the rules for the benefit of everyone.  However, it was fascinating to see the story of people without expertise who participated and achieved great results because of their tenacity.