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.

  • In the context of the symposium, health/biomedical, social media, and (to a degree) sociology/psychology data were the focus on the discussion with an emphasis on quantitative data. In future conversations, considering qualitative data and privacy will also be important. Interviews, focus groups, oral histories, etc. all produce data that raise privacy questions and concerns.
  • At times the conversation seemed to conflate the question of whether data was “research data” with the question of whether the person who had collected and/or who wanted to access and use the data was a “bona fide researcher.” I think we find more clarity in separating the question of whether data is research data from the question of who is allowed to access and use it. This is particularly useful if we want to affirm the tenant that an individual whose data is in the data set should have a right to access (and possibly review, correct, and/or delete) his or her own data. How to think about citizen science is also an open question here.
  • I also left thinking that, while this topic is vast, one way to develop a focus for the coming year would be to think carefully about capitalizing on NISO’s leadership/participation in this NISO-RDA project. There are many facets to privacy in research data. Is there a way to best use NISO’s areas of expertise, recognizing that the RDA community at large may have additional interests as well?

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.

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