Joint RDA/NISO Interest Group on Privacy Implications of Research Data Sets
Scope of the group and any previous activities:
This Interest Group is exploring issues related to scientific research data sets that contain human subject information, as well as related datasets that have the potential to be combined in a way that can expose private information. The group is currently organized into several task forces investigating various aspects of research data privacy (described below), but its ultimate 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, and to build awareness of the privacy implications of research data sharing. The interest group is also developing a joint bibliography of works covering these areas. While privacy is related to the ethical, legal and data publishing issues surrounding data management of which privacy is a part, this interest group is focused specifically on privacy-related concerns.
Several task forces discuss targeted areas of interest:
Framework: Development of a framework that explains, at a high level, the precautions that data creators, repositories, aggregators and scientists should use in creating, using, preserving, and providing access to research data.
Definitions and Use Cases: Definitions of key vectors where privacy issues are evident in the ecosystem of data sharing and reuse. An outline of situations where the privacy principles would be applied.
Metadata: Definition of a set of technical metadata that can be used to describe privacy-related information contained within a data set, parameters for use, and description of where it should be applied.
Legal Variances: Identification of key areas of variance in privacy laws or regulations at national and international levels that are significant when sharing data worldwide.
Disciplinary Differences: Identification of key differences among research disciplines that are significant as it relates to data sharing and related privacy concerns.
Case statements/working documents
Case statement: https://rd-alliance.org/group/rdaniso-privacy-implications-research-data-sets-wg/case-statement/rdaniso-privacy-implications
Coordination and updates on IG orientation; activities and approaches taken by IG task forces; any liaisons with other RDA or external working groups
2. Update on Interest Group approval
3. Bibliography update
4. Task force updates and/or description
Discussion of potential/actual task force output/s & any gaps or overlaps
5. Next steps
This is an open session. It is oriented to current interest group members and those who are interested in discussing the landscape of research data privacy and/or any of the task force areas noted above.
The intended eventual framework [group output] is oriented to: repository managers, scholars who are producing data sets, administrators who have just been appointed to the IRB
Contact person: Bonnie Tijerina