Case Statement: Joint NISO-RDA Working Group on Privacy Implications of Research Data Sets
This 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.
This working group will be open to all RDA and NISO members.
The group will work to achieve the following specific outcomes:
1) 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.
2) Definitions of key vectors where privacy issues are evident in the ecosystem of data sharing and reuse.
3) An outline of situations where the privacy principles would be applied.
4) Identification of key areas of variance in privacy laws or regulations at national and international levels that are significant when sharing data worldwide.
5) 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.
6) Advancement of adoption of the principles through an outreach and communications campaign.
Additional ancillary benefits of this project will be:
1) Improving the understanding of the privacy issues that relate specifically to research data from distinct stakeholder perspectives.
2) Support of a worldwide dialogue about the privacy issues that surround the sharing, combination, and reuse of research data.
3) Reduction of the risk of an unintentional release of personally identifiable information through the sharing or reuse of research data.
4) Through the creation and adoption of this framework, reduction of the potential risk to scientific discovery writ large that might be caused by the unintentional but significant exposure of personal data.
Mechanisms and Coordination:
The group will meet face-to-face during the RDA Plenaries to craft its work plan, build interest and awareness, and to share its work with other working and interest groups regarding privacy and data sharing.
The group will meet virtually twice per month during the interim periods between plenaries. This will be undertaken using NISO’s virtual meeting service as well as using the RDA’s supporting services, such as the RDA website and wiki.
Meetings and group communications will be coordinated by NISO staff and the other co-chairs.
NISO is planning to host a public symposium on research data and privacy, in coordination with the RDA P8 in Denver, CO in the fall of 2016.
All documents related to this project will be publicly available on both the RDA website and mirrored on the NISO website.
DATE Milestone Lead Responsible
December 2015 Case Statement Submitted Carpenter
Recruitment of working group participant begins Carpenter/Tijerina
Co-chairs identified and selected Carpenter
January—February 2016 Preparation for March project launch meeting O’Neill
Subcontract with Data & Society finalized Carpenter
RDA Case Statement Approval RDA TAB
Logistics arranged for first meeting in Tokyo O’Neill
March 2016 Project Launched
First meeting of Working Group (Tokyo) Working Group
Public webinar announcing launch Lagace
Logistics planning for Symposium O’Neill
March —August 2016 Nine bi-weekly meetings with working group Working Group
June — August 2016 Preparation for Denver, CO area meeting O’Neill
September 2016 Second full-day meeting of Working Group (Denver) Working Group
Public Teleconference about progress on project Lagace
NISO public symposium on data & privacy NISO Staff
Report to RDA on progress Carpenter/Tijerina
October 2016—March 17 Ten bi-weekly meetings with working group Working Group
January 2017 Public review of draft outputs for review Working Group
Open Teleconference to discuss process Lagace
Beginning of logistics for RDA Plenary (Barcelona) O’Neill
March 2017 Drafting of outputs begins Working Group
April 2017 Final working group meeting (Barcelona) to discuss Working Group
output and promotion
Report to RDA Carpenter/Tijerina
Final Public Webinar to announce products Lagace
April—July 2017 Six bi-weekly meetings with working group Working Group
May—June 2017 Promotional presentations about project and outputs Working Group
July 2017 Working group completes drafting work Working Group
July—August 2017 Final NISO approval by Business Information TC Lagace
Drafting of final report to RDA Working Group
September 2017 Final Report presented to RDA Carpenter/Tijerina
Scope of the WG
Discuss the outline of work plan
Discussion of outputs
Schedule bi-weekly WG meetings from April to August
Identify additional WG participants