RDA/NISO Privacy Implications of Research Data Sets IG


Group details

Secretariat Liaison: 
TAB Liaison: 
Paul Uhlir
Case Statement: 
IG Established

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

28 Nov 2019

Deadline For P15 Group Session Submissions Extended To 5 December 2019

Dear RDA members, 


RDA's 15th Plenary meeting, Melbourne, Australia, 18-20 March 2020 


The deadline to submit session proposals for Plenary 15 in Melbourne, Australia has been extended to 5 December 2019, midnight UTC.

24 Jun 2019

Plenary 14 Session Submission Deadline Is Thursday!

With Plenary 14 (P14) scheduled to occur from October 23-25, the deadline for session submission is this Thursday, 27 June at 16:00 UTC.

Submissions for meeting sessions are open to working groups, interest groups, joint groups and birds of feather (BoF) meetings.

Please note, however, submissions are accepted from group chairs only. If you submit a session request for a group, please notify the other chairs of that group.

16 May 2019

Plenary 14: Call for Sessions, Collocated Events, Posters and Registration Now Open!

Taking place from 23-25 October 2019, the 14th RDA Plenary will take place in Dipoli, the nature-immersed building of Aalto University, Helsinki, in Finland, “one of the happiest countries in the world”, states Per Öster, CSC-IT Center For Science Director and Co-Chair of the P14 Programme Committee.


18 Mar 2018

invitation to RDA meeting on Sensitive Data

to: RDA/NISO Privacy Implications of Research Data Sets IG’
Dear all,
Because of the partial overlap between the "RDA/NISO Privacy Implications of Research Data Sets IG” and the subject of Sensitive Data, I would like to draw you attention to a meeting at the RDA plenary coming week “Sensitive data for Open Science”. The meeting is scheduled on Thursday 15:30-17:00 in Room C04.
Hope to see many of you.
Best regards,
Daan Broeder, Francesca Iozzi, Wolgang Kuchinke
Daan Broeder
Tel. +31 20 4628625

07 Feb 2018

New European report: Legal Barriers to Open Data Sharing

Hi all
I saw this and thought it might be of interest to this group
"The recently published *Study on legal barriers to open data sharing -
Data Protection and PSI
a closer look at legal barriers to data sharing within the context of the
European Commission’s Open Research Data Pilot in Horizon 2020. The study
investigates two legal issues for the implementation of the Pilot, i.e.,

06 Oct 2017

Webinar "Handling Restricted and Sensitive Data" on Oct. 12

I just saw this announced on the IASSIST member list and thought it may be of interest to members of this group:
There is a webinar on "Handling Restricted and Sensitive Data" on Oct. 12, 12:00-13:30 US-Eastern time, sponsored by the SLA Data Caucus (http://data.sla.org/). Details/registration at
Stefan Kramer