- 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>
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