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Re: position in cancer informatics

From: David Booth <david@dbooth.org>
Date: Fri, 20 Jul 2012 10:00:47 -0400
To: Stefan Decker <stefan.decker@deri.org>
Cc: Helena Deus <helena.deus@deri.org>, Melvin Carvalho <melvincarvalho@gmail.com>, "nathan@webr3.org" <nathan@webr3.org>, Michael Hausenblas <michael.hausenblas@deri.org>, "semantic-web@w3.org" <semantic-web@w3.org>, "public-lod@w3.org" <public-lod@w3.org>, "www-rdf-interest@w3.org" <www-rdf-interest@w3.org>, "protege-discussion@lists.stanford.edu" <protege-discussion@lists.stanford.edu>, "semanticweb@yahoogroups.com" <semanticweb@yahoogroups.com>, "dbworld@cs.wisc.edu" <dbworld@cs.wisc.edu>, "machine-learning@egroups.com" <machine-learning@egroups.com>, "taverna-users@lists.sourceforge.net" <taverna-users@lists.sourceforge.net>, "bbb@bioinformatics.org" <bbb@bioinformatics.org>
Message-ID: <1342792847.3486.20152.camel@dbooth-laptop>
On Fri, 2012-07-20 at 10:22 +0100, Stefan Decker wrote:
> The discussion seem to point to a deeper question: how to enable crowd
> sourcing of the analysis of these kind of data sets? This may involve
> running of analysis code or maybe even manual work.
> What kind of computational infrastructure would we need to enable
> this? And how do we validate and aggregate results?

Unfortunately, in the USA at least, the biggest barriers are not
technical, but social, because: (a) health information privacy laws such
as HIPAA
http://www.hhs.gov/ocr/privacy/ 
make it difficult or impossible to publish the raw data that would be
most useful for research; and (b) researchers do not have the incentive
to publish their data that might allow other researchers to make
discoveries.  

There is a tension between privacy and the usefulness of data for
research, because full de-identification removes information that can be
critical to determining cause and effect, such as dates, times and
locations.  

We need better ways -- both bottom-up, such as http://weconsent.us/, and
top-down, such as legal changes -- to both encourage the availability of
research data and to facilitate appropriate access to it, such as
establishing well-defined tiers of access for different purposes.

We need technical solutions that will help us work through and around
these social barriers.


-- 
David Booth, Ph.D.
http://dbooth.org/

Opinions expressed herein are those of the author and do not necessarily
reflect those of his employer.
Received on Friday, 20 July 2012 14:01:23 UTC

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