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

26 Jun 2017

disregard calendar attachments - Re: [rdaniso-privacy] Setting up meetings for IG task groups

Please disregard the calendar attachments I sent out just now- they are an hour earlier than the meeting times. I apologize for confusion. I think it is probably more straightforward for you to enter the meetings into your own calendar. Sorry again. We look forward to your participation in the task groups!

26 Jun 2017

RDA/NISO Privacy Task Group A/B

Calendar event for Task Group A&B (Value Statements and Codes of Ethics; Personas)
RDA/NISO Privacy Task Group A/B
Scheduled: Jul 17, 2017, 3:00 PM to 4:00 PM
Location: 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

15 Jun 2017

RDA Data Share Fellow Re-Introduction

Hello RDA/NISO Privacy Implications of Research Data Sets Interest Group chairs,
To re-introduce myself, I am Sam Grabus, a 2017-2018 Data Share fellow. Thanks again for supporting my proposed project, which focuses on facilitating data sharing through the development of best practices for IRBs regarding data sharing and rights management metadata.
I attended the RDA Data Share orientation up in Troy, and began digging into some background reading to inform next steps. As a reminder, this was my proposed timeline for the project (though this is now a 1-year fellowship):

15 Jun 2017

Setting up meetings for IG task groups

hi all,
We are hoping that the task groups (further described on the group wiki pages at https://www.rd-alliance.org/group/rdaniso-privacy-implications-research-...) can have a few meetings in the coming weeks to progress the ideas that many of you have contributed so far.
Here are a few Doodle polls in this regard - can you please fill them out for the groups you’d like to participate in, by Wednesday June 21?

12 May 2017

Notes and next steps from P9, Barcelona

Dear all,
The RDA/NISO Privacy Implications of Research Data Sets IG had a productive in-person meeting in Barcelona on April 5. I apologize for the lateness of these notes. We hope that all of you will be willing to continue to participate in one of these task groups, which all were able to work in Barcelona. Task group leaders will follow up with the full IG in the near future with more information on specific times for conference calls to continue this work.

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