From: "Clifford Lynch" <CNI-ANNOUNCE@cni.org>
Sender: <cgplmgr@cni.org>
To:  CNI-ANNOUNCE
Date: Thu, 20 Feb 2014 14:40:00 -0500
Message-ID: <redirect-25724132@cni.org>
Mime-Version: 1.0
Subject: Data Sharing and Human Subjects: Two Recent Report
Content-Type: text/plain; charset="us-ascii" ; format="flowed"

I wanted to share two (relatively) recent reports dealing with 
various aspects of human subjects, personally identifiable data and 
research data management and reuse.

The first comes from the US National Research Council and is titled 
"Proposed Revisions to the Common Rule for the Protection of Human 
Subjects in the Behavioral and Social Sciences" and can be downloaded 
for free (or purchased in print) from

http://www.nap.edu/catalog.php?record_id=18614

This is a wide-ranging report that builds on an earlier (March 2013) 
Workshop report that I posted last year to CNI-announce; it deals, 
among many other things, with questions about when Instutional Review 
Boards should become involved in behavioral and social sciences 
research and to what extent; it also deals with issues about data 
reuse.

The second is a report from the EU DASISH (Data Services 
Infrastructure for the Social Sciences and Humanities) program (see 
www.dasish.eu for a general overview). Confusingly, the project 
reports are here

http://dasish.eu/deliverables/

rather than under "publications", and of particular interest is the 
report "Legal and Ethical Issues" under "New IPR Challenges",  at

http://dasish.eu/publications/projectreports/D6.1_final.pdf

which provides a very helpful look at some issues surrounding the 
sharing and reuse of human subjects data from an EU perspective. The 
report is actually from June 2013, but I only saw it recently.

I hope these are helpful for readers trying to track policy 
development in this important area.

Clifford Lynch
Director, CNI