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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
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

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

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.

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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