About this page: This page captures original task group structures and guiding questions for the IG. Questions included here may be ones for future IG investigation. Documents developed by original Framework task group and Policy & Practice task group (prior to the merging of the two in February 2017) are hyperlinked here.
Framework Task Group
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.
Members:
- Michael Zimmer
- Nora Mattern
- Ken Varnum
- Bonnie Tijerina
- Kendall Roark
- Ruth Duerr
- Lisa Hinchliffe
- Sara Mannheimer
Open issues/questions:
- What counts as sufficent de-identification of data?
- Should we combine this issue with Metadata group below?
- Is de-identification always necessary? (Is it at least possible that research subjects could have consented to identification.) Perhaps alternative is to align repositing practices with consent agreements?
- What are key concepts, theories, factors and the relationships among them that we should aim to unpack in developing this framework?
Task Group Notes for RDA/NISO Privacy Implications of Research Data Sets IG P8 (document includes articulation of outputs)
Output for Frameworks Task Group Document
Disciplinary Differences Task Group
Identification of key differences among research disciplines that are significant as it relates to data sharing and related privacy concerns.
Members:
- Michael Zimmer
- Nora Mattern
- Lisa Hinchliffe
- Sebastian Karcher
- Krish Bilimoria
- Sara Mannheimer
Open issues/questions:
- Perhaps we can approach this investigation by having members choose to look along disciplinary groupings -- i.e. have a team (or individual) who is looking at the social sciences, another at the natural sciences, and so on.
Policy & practice Task Group
Development of policy recommendations and guidance to support responsible sharing of personal and sensitive data, as well as tools to help institutions put these recommendations into practice.
Members (alphabetical order, co-chairs underlined)
- George Alter
- Elise Dunham - data management services, including consultations & repository, with Research Data Service at University of Illinois at Urbana-Champaign
- Margaret Fotland
- Lisa Hinchliffe
- Sebastian Karcher
- Dessi Kirilova
- Nettie Lagace
- Kate LeMay
- Sara Mannheimer
- Marta Teperek - responsible for research data sharing at the University of Cambridge, UK
- Bonnie Tijerina
Open issues/questions:
- Who and how should decide whether access to data can be granted? How repositories can do this effectively in the world were researchers are very mobile and datasets are preserved and shared long-term?
- What needs to happen for a repository to accept personal/sensitive data? What conditions needs to be met?
- How to advocate for responsible data sharing? Could we develop set of workshops and tools for researchers?
Aims and objectives - editable document
Notes from meetings:
Outputs:
- Document collecting outputs gathered by the Group (work in progress)
- Shared document for gathering Frequently Asked Questions and Answers (work in progress)
Metadata Task Group
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.
Members:
- Michael Bolam
- Kendall Roark
Open issues/questions:
- Should we combine this issue with Framework group above?
- [add statement]
Legal Variances Task Group
Identification of key areas of variance in privacy laws or regulations at national and international levels that are significant when sharing data worldwide.
Members:
- Jess O'Toole
- [add name]
Open issues/questions:
- Should we coordinate at all with the RDA interest group on legal interoperability of data sets?
- Perhaps this can also be folded into the Framework subgroup
Definitions and Use Cases Task Group
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.
Members:
- [add name]
Open issues/questions:
- [add statement]
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