Open Access News

News from the open access movement

Tuesday, June 24, 2008

Sharing data on human subjects

Stuart Macdonald, Anonymity and consent, DataShare Blog, June 19, 2008.
On Tuesday 17th June I attended a RELU / UK Data Archive workshop at the University of Edinburgh [Managing and sharing research data (Edinburgh, June 17, 2008)] on managing and sharing research data. The workshop addressed issues surrounding confidential research information and personal data; developing consent agreements; anonymisation techniques and access regulations to enable use and sharing of research data. It was apparent that there were no real broadbrush solutions to anonymisation, consent, sharing issues in the social sciences and that each data set, each audience, each set of participants have to be looked at in turn to determine optimal effectiveness.

There were parallels to be drawn with regards to data repository policies on the subjects of disclosure and consent however what was evident from this well organised and well presented workshop was that social science data does not lend itself to open access environments the same way that data from the primary and natural sciences do. In addition to confidentiality, disclosure and consent, we also have the issue of hierarchical relationships between files (longitudinal/panel surveys etc) in addition to ethical and legal implications. ...