Lisa Janicke Hinchliffe

Privacy in Research Data at FORCE11 #force2016

I had the pleasure of attending FORCE11 2016 Conference pre-conference in Portland today 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].

We had our first discussion at the Research Data Alliance Seventh Plenary Meeting in Tokyo in March, which introduced the project and examined in detail the question of whether the project is best suited to be an RDA Interest Group or Working Group. The discussion at FORCE11 reviewed these issues as well but quickly focused on some questions of substance about the content of the framework that is being created and what will be most useful for the community.

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 Case Statement also presents a Work Plan for the group: “focus on world-wide legal frameworks and the impacts these frameworks have on data sharing, especially with human-subject data. After gathering these legal strictures and comparing the differences and similarities, the group will begin crafting a set of principles that will provide guidance to the researcher and repository communities on how to manage these data when they are received. Building on these, the group will craft a set of use cases on how the principles will be applied. After these elements are completed, an effort to advance the principles through promotion and community outreach will be developed and executed.”

Today’s discussion was, as expected (since we are at the beginning of the work and thus in brainstorming mode), wide-ranging. Nonetheless, as I listened to the comments and questions, a few themes emerged from my perspective:

The RDA/NISO Privacy Implications of Research Data Sets Working Group will be holding a number of conference calls in the coming months to discuss these issues as well as a public symposium on September 11, 2016 in Denver. Anyone is welcome to contribute to the group by joining the forum on the RDA/NISO Privacy Implications of Research Data Sets Working Group website to receive notifications of meetings and other events as well as drafts of the framework as it emerges.