A W3C Community Group was established in June of 2021 to discuss and develop portable personal data preferences. From the group's charter:
"A problem with terms of service agreements is that they often require an all-or-none acceptance or rejection. In addition, they may be in a form that is not accessible to persons with disabilities making it difficult to make an informed decision. The mission of this community group is to find ways that help users understand what they are being asked to commit to, and to provide a finer grain of control in terms of what they are willing to share. The overall goal is to put control of personal data into an individual’s hands."
Community Group page: W3C Portable Personal Data Preferences
Member page: Participants
Mailing list archives: Public Mailing List
Link to summary of first meeting: Summary of Goals and Problems
The ICES group has been developing a specification for the governance and management of data trusts. There was a teleconference in December of 2021 where the draft of the specification was discussed. Subsequently, the draft was reviewed online in January 2022. The final draft has since been submitted for publication. The title and abstract are reproduced below:
"Working Title: Essential Requirements for the Governance and Management of Data Trusts, Data Repositories and Other Data Collaborations
Paprica PA, Crichlow M, Curtis Maillet D, Kesselring S, Pow C, Scarnecchia T, Schull MJ, Cartagena RG, Cumyn A, Elliston KO, Greiver M, Hill SL, Isaranuwatchai W, Loukidpoudis E, McDonald JT, McLaughlin J, Rabinowitz A, Razak F, Verhulst SG, Verma AA, Victor JC, Young A, Yu J, McGrail KM
Acknowledged individuals: Megan Ahuja, Kimberly Begley, Charles Burchill, Lisa Dietrich, Amy Hawn Nelson, Mary Horodyski, Theodore Konya, Denise Mak, Kirk Nylen, Parisa Osivand, Sujitha Ratnasingham, Joseph Scheuhammer, Andrea Smith, Eric Sutherland, Jennifer D. Walker, Nicole YadaPage
Introduction: Around the world, many groups are working on ways to increase uses of person-level data for research, evaluation, planning and innovation while ensuring that data are secure, and privacy is protected. As a contribution to these broader efforts to improve data governance and management, we previously published 12 minimum specification (min specs) essential requirements to provide practical guidance for organizations establishing or operating data trusts and other forms of data infrastructure.
Aim and Approach: We convened an international team of more than 50 people to discuss, test, and refine the original 12 min specs requirements. Twenty-three (23) organizations completed templates and five analysis sub-teams were formed to identify improvements and commonalities and differences in terms of how the min specs are being fulfilled.
Results: The updated list of essential requirements has 15 min specs in five categories: one min spec for Legal, five for Governance, four for Management, two for Data Users and three for Stakeholder & Public Engagement. The main changes were: one new Governance min spec focused on Indigenous data sovereignty, one new Management min spec focused on data documentation, the division of what was previously a single requirement under Stakeholder and Public Engagement into two distinct min specs, and multiple changes to make the guidance more precise and directive. In addition, we have changed the way we use the term “data trust” to clarify that that the min specs are meant to apply to multiple kinds of data infrastructure and provided links to public examples that may serve as models for how to fulfill individual min specs.
Conclusion / Implications: Including international team members in the testing and refinement of the min specs led to significant improvements. The process we used may also benefit other teams and organizations who are working to progress from frameworks and principles to practical guidance."