There are some very well known people behind Sage, and it's received backing from Merck (and Science Commons), among others. See, e.g., http://creativecommons.org/weblog/entry/19646, which states that Merck has backed them to the tune of 150 million dollars. At the moment they're just getting off the ground.
Another interesting step is the Federal Research Public Access (http://www.arl.org/sparc/publications/articles/FRPAA-introdu... ), which would make most US-government sponsored research publicly available. It's not quite the same as open data, but is very consonant with it.
http://michaelnielsen.org/blog/michael-a-nielsen/
At any rate, the folks on PatientsLikeMe.com are sharing, and they have results to show for it:
http://www.ted.com/talks/jamie_heywood_the_big_idea_my_broth...
Really inspiring stuff, because I assure you that the folks participating in these programs do not consider themselves hackers OR radicals.