RDA/NISO Privacy Implications of Research Data Sets IG

IG

Group details

Chair(s): 
Todd Carpenter, Bonnie Tijerina, Libby Bishop, Freyja Vandenboom
Secretariat Liaison: 
Timea Biro
TAB Liaison: 
Ingrid Dillo
Case Statement: 
 

This IG starter out as a Working Group, to 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.

After submitting their Case Statement, the group decided to become an Interest Group, to enable even broader discussion.

Recent Activity

07 Feb 2017

Relevant report from the US Government on combing data and protecting privacy

Of relevant interest to our Interest Group:
Innovations in Federal Statistics: 
Combining Data Sources While Protecting Privacy (2017)
Contributors
National Academies of Sciences, Engineering, and Medicine; Division of Behavioral and Social Sciences and Education ; Committee on National Statistics ; Panel on Improving Federal Statistics for Policy and Social Science Research Using Multiple Data Sources and State-of-the-Art Estimation Methods; Robert M. Groves and Brian A. Harris-Kojetin, Editors
Description

01 Feb 2017

RDA/NISO Data Privacy IG News: Merging of Frameworks/Policy and Practice task groups

Dear All,
On Tuesday 24 January, the RDA/NISO Privacy IG Chairs and Co-Chairs of
Frameworks/Policy and Practice task groups discussed the potential overlap
between the two task groups.
It has been decided that *the two task groups (Frameworks/Policy and
Practice) will merge into a single group: Policy Frameworks to Practice*.
There are several reasons for this decision:
- No risk of duplication efforts/work.
- The currently defined outputs from the Frameworks and Policy task

11 Jan 2017

Policy and practice task group - catch up call today at 3pm

Hi All,
Just a quick reminder that the Policy and Practice task group has a catch up
call today at 3pm. We're meeting via google hangouts:
https://hangouts.google.com/call/mnfimhb36benvcr2ynpvflt2uie
Agenda:
1. Discuss the potential overlap with the Frameworks task group (their
outputs document:
https://docs.google.com/document/d/1KVMa-vj9O0wzX2rQAh4L0-SENEu5wJEAwZK4...

11 Jan 2017

RE: Policy and practice task group - catch up call today at 3pm

Dear All,
Just a quick clarification, this is 3pm GMT.
Best,
Marta
Marta Teperek, PhD
Research Data Facility Manager
Cambridge University Library / Research Operations Office
e-mail: ***@***.***
tel. 01223 333138 (Friday - Wednesday)
tel. 01223 761652 (Thursday)
Twitter: @martateperek
You can arrange a meeting with me

12 Dec 2016

Plenary meeting at P9 in Barcelona

Good morning everyone,
We have submitted a proposal to RDA for a plenary meeting of the IG during the P9 meeting in Barcelona. I hope many of you can join us. The focus of the meeting will be on the work of the Task Groups and advancing their work. We expect, as in Denver, a lively discussion.
Information about the groups can be accessed via the RDA website wiki for our IG >
If you are not yet a member of a Task Group, please reach out to the leaders of those groups or me.

07 Dec 2016

Framework Task Group December Phone Call, 12/19 - 12-1pm EST

Dear colleagues,
Thanks to all who participated in the Doodle poll for the Framework task group meeting. Please mark your calendars for a phone meeting on Monday, December 19, at 12-1pm Eastern Standard Time.
The details for the dialing into the call are as follows:
US: preferred 973-935-2037 / backup 1-877-375-2160
UK: preferred 020-3107-0236 / backup 080-8234-8621
Global numbers can be found via http://bit.ly/niso-dialin
Conference code: 10711493

06 Dec 2016

Catch up call invitation: Policy and Practice task group meeting on 11 January

Dear All,
Many thanks for those who could attend our catch up call for the Policy and Practice task group last Friday.
Notes from that call are available here: https://docs.google.com/document/d/16OdYuu_urw4hiTA64Qvm-9E--Gcx-fYapyk6... (please feel free to add your extra notes to that document)
And a couple of summary points and actions from that call:

06 Dec 2016

Notes from the last Policy and Practice catch up call on 2 December

Dear All,
Many thanks for those who could attend our catch up call for the Policy and
Practice task group last Friday.
Notes from that call are available here:
https://docs.google.com/document/d/16OdYuu_urw4hiTA64Qvm-9E--Gcx-fYapyk6...
WrA/edit?usp=sharing (please feel free to add your extra notes to that
document)
And a couple of summary points and actions from that call:
- I have added all people who attended the call and also people who