Lisa Janicke Hinchliffe

Reflections on “Privacy Implications of Research Data: A NISO Symposium”

I had the opportunity to attend “Privacy Implications of Research Data: A NISO Symposium” (Sponsored by the NISO-RDA Joint Interest Group) in Denver this past weekend  as a member of the RDA/NISO Privacy Implications of Research Data Sets Working Group. I’m grateful to Todd Carpenter, NISO Executive Director, for including me in this project, which is a follow-on to the project group that I was a member of that produced the NISO Consensus Principles on Users’ Digital Privacy in Library, Publisher, and Software ­Provider Systems [PDF].

As the Case Statement for the Working Group states, the goal is to “develop a framework for how researchers and repositories should appropriately manage human-subject datasets, to develop a metadata set to describe the privacy-related aspects of research datasets, compile a bibliography of related resources, and to build awareness of the privacy implications of research-data sharing.”

The speakers were all thoughtful and each provided a focused talk on some aspect of this multi-faceted topic that continues to shift while we grapple with it. And, in fact, that was one of the themes that emerged in the talks – the lack of clear definitions of what we mean by the terms privacy, research, and data. Terms we all use regularly but seem to defy easy operational definition in the context of this project.

All of the presentations were recorded as well as the follow-on discussions and are accessible from the symposium website and so I won’t recap them here in summary. Instead, I’d like to offer a few reflections.

As a reminder, anyone is welcome to contribute to the group by joining the forum on the RDA/NISO Privacy Implications of Research Data Sets Interest Group website to receive notifications of meetings and other events as well as drafts of the framework as it emerges.

I previously blogged about the meeting for this project held at FORCE11 in April 2016.