I’m excited to join (another) NISO project, in partnership with the Research Data Alliance, focusing on the privacy implications of shared research data. I’ll be joining Todd Carpenter (NISO) and Bonnie Tijerina as co-chairs leading this effort.
The RDA/NISO Privacy Implications of Research Data Sets Working Group will explore issues related to scientific research data sets that contains human subject information, as well as related datasets that have the potential to be combined in a way that can expose private information. The goal of the group 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. While privacy is related to the ethical, legal and data publishing issues surrounding data management of which privacy is a part, this working group is focused specifically on privacy-related concerns.
The group will 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.
The group has released a case statement that is open for comment.