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

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

05 Sep 2017

Fwd: FW: Error processing message

Dear All,
A quick email to introduce myself as a follow-up to my brief intro in the
IG call that just took place.
I work for CGIAR, a network if 15 international agricultural research
centers. We are at the early stages of developing best practice guidelines
and support tools on ‘privacy and ethics considerations in the data
lifecycle, including practical approaches to address constraints’. I came
across this RDA IG while looking for external initiatives to connect with

25 Aug 2017

Task group meeting rescheduled to September 5

Dear members of the NISO/RDA Privacy Implications Of Research Data Sets IG,
This is a note to inform you of a change in the meeting date and time for the task groups that have been working on examining value statements related to privacy and research data and on creating use cases. The meeting originally scheduled for Thursday, August 31, at 4pm US Eastern time has been rescheduled to Tuesday, September 5, at 12pm US Eastern time.

01 Aug 2017

Google Docs

Dear colleagues,
unfortunately today's call again failed, one of the reason being problems with our local phone system but also because only one member (besides Nettie) was present. Maybe it would be more efficient to exchange thoughts by email and documents and have less frequently telcos? What do you think?
I have placed a first draft of a glossary on Google docs, open for your contributions:

26 Jul 2017

Task Group C meeting Aug 1, 8 am Eastern US

hi all, thank you for filling out the Doodle poll for task group C (Resources for Stakeholders)
The time that worked for respondents was Tuesday, August 1 at 8 am Eastern US (find your time at https://www.timeanddate.com/worldclock/fixedtime.html?iso=20170801T08&p1=43 )
**** Please add this meeting to your calendar!*****
Dial-in information:
US: preferred 973-935-2037 / backup 1-877-375-2160
UK: preferred 020-3107-0236 / backup 080-8234-8621

26 Jul 2017

Task Group A/B meeting Aug 3, 17, 31, Sept 14 4 pm Eastern US

hi all, thank you for filling out the Doodle poll for task groups A ((Value Statements and Codes of Ethics) & B (Personas):. A time that works for most respondents is 4 pm Eastern US on Thursdays.
*****Please add these meetings to your calendars!!****** If you have not yet participated on the task groups, your input and participation is still quite welcome.

20 Jul 2017

Please fill out Doodle polls to schedule Task Group calls

hi, it’s me again!
Hoping that you will all participate on a task group - your input is welcome at any time, even if you have not yet been on a task group call. Doodle polls are still open for another day or so.
Task Group A (Value Statements and Codes of Ethics) and Task Group B (Personas): http://doodle.com/poll/sxvtrnwvfn6tst83
Task Group C (Resources for Stakeholders): http://doodle.com/poll/y3p94qhpsee9qw2x
thank you!