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

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!

19 Jul 2017

Telco on 2017-07-17

Dear members of the Privacy IG ,
The telco on Monday, 17 was poorly attended (Nettie, Todd & me) so no major decisions could be made.
Based on the course of action decided at the previous meeting we decided to focus on some basic aspects:
- Development of the FAQ: anyone may contribute questions even if not sure how to answer. Search in your mind which questions regarding data privacy you have come across or have been asked.

17 Jul 2017

Fwd: Doodle: Link for poll "NISO/RDA Privacy Implications Of Research Data Sets IG - A & B"

hello, here is a Doodle poll for scheduling upcoming calls for Task Groups A&B.
We will use this poll to pick the time of our next conference call, but the time chosen will also be used to schedule ongoing meetings on a bi-weekly basis (e.g., if the time chosen is Tuesday August 1, the next meetings will be August 15 and 29, September 12).
Please fill out your availability at http://doodle.com/poll/sxvtrnwvfn6tst83 - ideally in the next few days if you can.