Re: position in cancer informatics

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.