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Data Sharing and Human Subjects: Two Recent Report

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

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Last updated:  Thursday, February 20th, 2014