IG RDA/NISO Privacy Implications of Research Data Sets - RDA 11th Plenary meeting

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02 January 2018 1773 reads

Meeting title

Privacy & Research Data IG Meeting (Remote Access Instructions)

Collaborative session notes: 


Link to meeting slides: https://www.slideshare.net/BaltimoreNISO/rdaniso-data-and-privacy-implications-of-data-sets-plenary-11


Links to Overall Outputs doc: https://docs.google.com/document/d/1fOX0jrU8NJdbgrnXkwV7gAeeR90xnhk-XkUACg4HiDY/edit

Value Statements


Use Cases

Data Privacy Glossery: https://docs.google.com/spreadsheets/d/1cMTmKrBBtJTgEa495CeTXDiiQrj1JAxvTP-3Sj1zbZ0/edit?usp=sharing


Registry of laws and regulations (Google Sheet): https://docs.google.com/spreadsheets/d/13quVkBAAWn5r_C20bCIQuKVcJWP-gWxHGNQ1flYZCSQ/edit?usp=sharing



Short introduction describing the scope of the group and if any previous activities

The joint RDA-NISO Interest Group on the Privacy Implications or Research Data Sets is exploring ways in which the creation, storage, sharing, and combination of, data sets might put at risk the privacy of human-subjects and ways that the research community can mitigate those risks. The interest group is focused on a variety of legal, policy and systematic ways in which privacy can be protected. Several outputs of the group are envisioned, including an overarching framework, a bibliography, guidance on consent and legal frameworks, as well as metadata extensions describing privacy information. The IG is also interested exploring ways to work with other IGs and WGs focused on specific topics that might have privacy implications, such as Health Data, Metadata, Ethics, and Security.

Additional links to informative material related to the group

The Interest group Case Statement is available on the RDA website: https://www.rd-alliance.org/groups/rdaniso-privacy-implications-research...

Information about the three Task Groups, that have begun working on aspects of these issues are available on the IG Wiki: https://www.rd-alliance.org/group/rdaniso-privacy-implications-research-...

Latest Drafts of Output Documents (Many other documents are linked from this page) :

Meeting objectives

This meeting will have several objectives. First is to present and discuss the draft outputs of the Use Cases, Definitions, Values Statements groups. The second objective is to discuss the leadership and ongoing plan for the IG moving forward.

Meeting agenda

  • Welcome & Introductions
  • Recap of Charge & IG Goals
  • Discussions of the IG Task Group Output drafts
    • Personas
    • Use Cases
    • Definitions & Frameworks
  • Discussion of finalization of the outputs
  • Discussion of the IG leadership and next steps
  • Plan for meeting of P12 (if any)

Target audience:

Researchers working with human subject data, repository managers, administrators, members of institutional IRBs, policy experts and legal counsels might all be working with potentially privacy-challenged data.

Group chair serving as contact person: Todd Carpenter

Type of meeting: Working meeting

Group maturity: more than 18 months

Remote Access Instructions:

Please join my meeting from your computer, tablet or smartphone.

You can also dial in using your phone.

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