Response of IAG member Prof. Doorn presented during Session 2 of the workshop "Data Protection Issues for Trusted Digital Repositories: Challenges and Solutions", which primarily examined the challenges facing data repositories in meeting ethical and legal requirements of archiving research data. This was presented on the 16th of January, 2014 at the "Data Protection Issues for Trusted Digital Repositories: Challenges and Solutions" at the Royal Irish Academy.

1. Data Archiving and Networked Services
Data Protection Issues for
Trusted Digital Repositories:
Challenges and Solutions
Session 2. Data protection issues
for organizations
Peter Doorn, director DANS
DRI Workshop
Royal Irish Academy
19 Dawson Street, Dublin 2
Thursday 16th January, 2014
DANS is an institute of KNAW en NWO

2. Topics
1. The changing European environment for data
protection
2. The implications for data repositories
3. The ability of data repositories to vindicate the
agreements they make with depositors

3. 1. The changing European environment for data
protection
• European General Data Protection Regulation (DPR) is to replace
the current Data Protection Directive
• Very lively debate: >3000 amendments proposed
• Strong reactions from research community, esp. medical/health
science and social sciences
– Main worry is that the DPR will be so strict it will restrict research
on individual data
• Public Consultation on the Review of the EU Copyright rules:
Science Europe Working Group on Research Data is preparing a
response:
– claiming exceptions for research (eg. illustrations for humanities)
– special attention for data and text mining

4. Q: Do you think the proposed EU data
protection regulation is a threat for
access to personal data for research
purposes? How do you think we can
reconcile the importance of open data
with privacy concerns?
Neelie Kroes: “I believe that the
proposed EU Data Protection Regulation
is supportive of scientific research. While
seeking to ensure the protection of the
fundamental rights to privacy, the
proposed framework recognises the
speciality of scientific research and sets
out specific rules for this sector.”

5. 2. The implications for data repositories
• Laws and procedures governing access to confidential data differ
across national and regional boundaries
• Such laws continue to change and evolve (U.S. - revisions to the
Common Rule; EU Council - data protection legal framework)
• Access to confidential data differs across disciplines: sensitive
data that involves endangered species, at-risk cultural heritage
sites, stigmatized and vulnerable populations, and personal
health information require particularly rigorous review and
protection
• A proliferation of non-disclosure agreements, often applied to
proprietary data makes data sharing difficult if not impossible

6. 3. The ability of data repositories to vindicate the
agreements they make with depositors
• Funders/Research Organizations/Universities
increasingly require DMP & Open Access (some rights
reserved)
• Data deposit license linked to data access licenses:
– Open after registration
– Restricted (depositor is access authority; privacy is a major
issue)
– Other access (closed, embargo, access elsewhere)
– New: Open without registration
• Most social science data archives require researchers
to anonymize/pseudonymize their data before
deposit

7. Upcoming event
IASSIST conference, Toronto:
Session on “Encouraging Access to Confidential Data in
Canada, Europe, and the U.S.”
• George Alter, University of Michigan, ICPSR, altergc@umich.edu
• Peter Doorn, Data and Networked Services
(DANS), peter.doorn@dans.knaw.nl
• Laurence Horton, GESIS-Leibniz Institute for the Social
Sciences, laurence.horton@gesis.org
• Katharina E. Kinder-Kurlanda, GESIS-Leibniz Institute for the
Social Sciences, katharina.kinder-kurlanda@gesis.org
• Kendall Roark, University of Alberta Library, roark@ualberta.ca

8. Data Archiving and Networked Services
Thank you for your attention
www.dans.knaw.nl
www.narcis.nl
peter.doorn@dans.knaw.nl
The work DANS does
summarized in a 4 minute
video, introduced by
Neelie Kroes
http://youtu.be/HJbo-OAaJ1I
DANS is an institute of KNAW en NWO