Rare Sharing of Data Leads to Progress on Alzheimer’s | Hacker News Reader

Rare Sharing of Data Leads to Progress on Alzheimer’s

nytimes.com

50 pointsrobg14 comments

Research / IP is so broken - scientists more worried about prestige than their field, pharma spending on vanity drugs, ad infinitum...

Does anyone have any links to progressive projects in this area?

I don't want to repeat myself, but see my comment for links.

http://news.ycombinator.com/item?id=1600965

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?

I'd really like to talk to guys in this field.

I'm afraid that it's mostly just a human tendency to embrace "the way things are/should/will always be".

Tradition over ambition!

This kind of news makes me wonder if maybe we should just give up completely on patient privacy & by default just share everything.

Michael Nielsen is working on a new book called "Reinventing Discovery" which I very much hope is a step in this direction.

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.

Thanks for the shout out, Pete. A few bits and pieces:

Creative Commons has started an organization called Science Commons that has done some great work on getting scientists to share their data:

http://sciencecommons.org/

A promising step in this direction is Sage Bionetworks, which is attempting to use an open source style approach to drug development:

http://www.sagebase.org/

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.

A much broader overview on open data and related issues can be found in Peter Suber's open access timeline: http://oad.simmons.edu/oadwiki/Timeline

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.

Awesome set of links Pete!

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.

The Gates Foundation writes into their AIDS grant that researchers must share their data:

http://online.wsj.com/article/SB115335816005811923.html

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):

https://atlas.scharp.org/cpas/project/VISC/Completed%20CAVD%...?

Is the dataset something that anyone can access and download or do we need to be associated with one of the mentioned companies/research groups?

Edit: Looks like we can't exactly just hack on this in our basement

http://alois.med.upenn.edu/niagads/how_access1.htm

http://bit.ly/dgbmmk

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.

Single page:

http://www.nytimes.com/2010/08/13/health/research/13alzheime...

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