Baltimore, MD - January 7, 2016 - The National Information Standards Organization (NISO) has received two grants to develop a consensus framework for mitigating and managing the privacy risks related to the collection, preservation, sharing, use, and re-use of research data sets. The grants from both the Andrew W. Mellon Foundation and the Alfred P. Sloan Foundation will further advance NISO's existing privacy initiatives on user privacy in library, publisher, and software supplier systems, details of which were published in December 2015.
The 22-month project funded by the Mellon Foundation is called "Development of a Consensus Framework for Mitigating the Privacy Risks Related to the Collection, Sharing, and Use of Research Data Sets." A proposed joint NISO-Research Data Alliance (RDA) working group will develop the framework and associated metadata, use cases, and implementation support materials. Todd Carpenter, NISO Executive Director, will serve as the overall project director and co-chair of the working group. The working group will also be co-chaired by Bonnie Tijerina, a Researcher at the Data & Society Research Institute and founder of the Electronic Resources & Libraries conference. The Working Group Case Statement is currently open and available for comment (log in is required) on the RDA website.
Work on privacy issues surrounding data sets is related to and will build upon ongoing initiatives at NISO and RDA. The framework will fill a need in the international science, social science, and humanities communities, which often work with human subject research data but lack concrete guidelines as to how to safeguard those data as they are shared, used, and processed. Institutional repositories have too often dealt with the question of privacy in data sets by exclusion rather than management. Not only do repository managers risk incurring significant financial penalties in this process, they also create avoidable barriers to data sharing and reuse.
In order to explore the issues and provide needed guidance, global leaders in the areas of data science, repositories, privacy, publishing, and technology will be invited to participate in the working group, which will convene both virtually and in person at RDA plenary meetings over the next 18 months in Tokyo, Japan; Denver, CO; and Barcelona, Spain.
Additional efforts related to this working group and the initiative will be supported by a grant from the Alfred P. Sloan Foundation called "Support for public outreach, engagement, and promotion of the joint NISO-RDA Working Group on the Privacy Implications of Research Data." Following the development of the framework and data protection guidelines for the international scholarly community, it will be important to advance an understanding by data creators, managers, and consumers of the privacy implications of exposing, using, and preserving research data. A full understanding of the risks will support better adoption of the framework, so that a key component of this project will be a public symposium where stakeholders will discuss important practical aspects of privacy and research data.
The symposium will be held concurrently with International Data Week 2016, September 11-17, 2016. This public symposium will bring together members of the Research Data Alliance, the ICSU World Data Systems, International CODATA, and the SciDataCon conference for a week of associated meetings in Denver, CO. Free live virtual participation is planned for those unable to attend in person, and a permanent video archive of the event will also be posted on the Internet for public viewing. Promotion of the work will continue after the symposium, with the Sloan Foundation also supporting the creation of related articles in NISO's Information Standards Quarterly and planned additional news reports documenting the event. Subsequent working group efforts will focus on wider adoption of the framework.
Public comments on the draft Case Statement on the RDA webpage are welcome. People interested in participating in this project are encouraged to either contact NISO's Associate Director, Nettie Lagace, or register with the Research Data Alliance and join the group on the RDA website (log in is required). More information about the project is posted on the NISO website.