Yea, that's exactly what I was looking for. I'm wondering what barriers are preventing this from getting biggers? Big education? Prestige for tenure / publish or perish? Publisher oligarchy?
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.
I for one have no reservations whatsoever sharing ANY medical data gathered concerning any illnesses I have. If it helps save just one life, it is worth sacrificing whatever illusions I have left of privacy as a patient.
My company helps the labs and researchers share their data using a portal website geared toward researchers and labs. Here is some of the data they've shared (chosen at random):
From my understanding of the article, the research they're referring to has to do with biomarkers (which aren't always genetic) and brain scans. If you go to the ADNI site (link: http://www.adni-info.org/Scientists/LinksForDataCollection.a...) you'll see that it is indeed possible to download some anonymized data and scans with less stringent approval. So, maybe basement hacks are indeed possible.
I'm always wanting really open data, but it seems that the people that have this a) aren't really as data-savvy as the rest of us with regards to actually supporting what openness would mean b) kinda want to know how it is being used in case you come up with something interesting or c) they do such domain-specific stuff that'd you'd almost have to be in the field full time to really get a hang for what it all means and what the common tools are.
Does anyone have any links to progressive projects in this area?