RDA/NISO Privacy Implications of Research Data Sets IG


Group details

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

19 Apr 2017

Health and medical data sharing webinar series in Australia

Hi all
In case anyone is interested, we have an upcoming health and medical
webinar series. We are based in Australia, so some information is location
specific, but some will be relevant to health research and data sharing in
other countries. The webinars are recorded so if they're in the middle of
the night for you, just register and we send everyone who has registered
links to the recordings after.
Here is the information:
The Australian National Data Service (ANDS )

05 Apr 2017

Managing and publishing sensitive data

Hi all,
Related to the great presentation by Thomas at the Plenary meeting today,
we had a webinar recently that covers a lot of the same issues of managing
access to sensitive data. It covered the social science archives in
Australia and the US, but the principles can be applied more widely than
social sciences.
You can find it the recording and slides here:
- Recording (Youtube)
- Prof George Alter (Research Professor, ICPSR & Visiting Professor,
ANU) - Sharing confidential data

28 Mar 2017

GoToMeeting connection info Re: [rdaniso-privacy] Agenda for IG meeting at P9, Barcelona

Dear IG members,
We are looking forward to our meeting at P9 next week! For those of you who can’t be there in person, here is the GoToMeeting connection information. Our meeting is 16:00 in Barcelona on Wednesday 5 April. I’ve set up a few cities at https://www.timeanddate.com/worldclock/converter.html?iso=20170405T14000... to check your local time.

09 Mar 2017

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

Hello RDA/NISO Privacy Implications of Research Data Sets IG Members:
We’ve merged the Frameworks/Policy and Practice task groups and created the
new Policy Frameworks to Practice Task Group with the following outputs:
A. Collection of Value Statements and Codes of Ethics
B. Personas
C. Resources for Stakeholders
You can view more details on our aims and outputs and you can add your name
to help out here

05 Mar 2017

Useful self-assessment toolkit for safeguarding privacy in academic research

Hi All,
For those interested in safeguarding privacy in academic research, my
colleague Marlon Domingus from Erasmus University Rotterdam put together
this toolkit for guidance and self-assessment:
This is particularly relevant for European Universities getting ready for
the new EC GDPR.

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)
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