Peter Doorn - Data Protection Issues for Trusted Digital Repositories: Challenges and Solutions

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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.

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Peter Doorn - Data Protection Issues for Trusted Digital Repositories: Challenges and Solutions

  1. 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. 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. 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. 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. 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. 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. 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. 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

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