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.

Committed to Privacy, Data Security and Civil Liberties

The Apple/FBI court case has raised threats to privacy, data security, and civil liberties to a new level of public awareness and media attention. I am pleased that ALA has been actively monitoring the case and I am proud of our advocacy for privacy and constitutional freedoms.

I believe we can anticipate that, regardless of the outcome of this specific case, we will see increasing efforts over the coming years to expand surveillance and erode privacy.

Given these circumstances, I have been working to bring attention to privacy and data security issues in libraries, particularly with respect to the third party databases and networked resources that we provide.

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Many conference calls and webinar presentations on privacy mean my headset gets used a lot!

I was a member of the national advisory committee that oversaw the development of the NISO Consensus Principles on Users’ Digital Privacy in Library, Publisher, and Software-Provider Systems and am now participating in the international Research Data Alliance-NISO Privacy Implications of Research Data Sets Working Group.

At my own library, I have been serving on the Privacy Policies Implementation Team, which articulated a set of privacy and data security principles, conducted a thorough review of our policies, and made recommendations for patron and staff training.

Later this month I will be speaking on Principles, Policies, and Procedures: From Values to Organizational Practices (strategies for developing library privacy policies) during a NISO Privacy Webinar – Understanding Library Policies. And, announced today, I will be co-presenting an ACRL Webinar with Andrew Asher on Privacy and the Online Classroom: Learning Analytics, Ethical Considerations, and Responsible Practice in April. Andrew and I have presented together previously and materials from our 2015 ALA Annual presentation, All the Data: Privacy, Service Quality, and Analytics are freely available.  I’ll also be an invited speaker on Learning Analytics: Opportunities and Risks at the “At the Intersection: Libraries & the Digital Learning Ecosystem” conference that is being hosted by the CIC Center for Library Initiatives.

ALA has a new director of the Office for Intellectual Freedom, Jamie LaRue. If you didn’t have a chance to participate in the webinar “Meet Jamie LaRue!” I highly recommend listening to the recording. I appreciate Jamie’s strong commitment to our library values and participatory approach to engaging with those who seek to challenge library materials or censor others.

As ALA President, I would be pleased to work with Jamie and proud to speak out on behalf of our commitment to privacy, freedom, and civic liberties.