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Short presentation of the issues under discussion in Session 1 of the workshop "Data Protection Issues for Trusted Digital Repositories: Challenges and Solutions", with a focus on the interaction between ethics and legal requirements in regard to the protection of research data about the individual. 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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Ruth Geraghty ResearcherDigital Repository of Ireland National University of Ireland Maynooth
Data protection issues for research participants, depositors and users
DRI Presentation
Research Ethics
Legal Requirements
Data Protection
Overlap of research ethics and legal requirements
DASISH Report: http://dasish.eu/publications/projectreports/D6.1_final.pdf/
DRI Presentation
Eight principles of data protection (Office of the Data Protection Commissioner website)• Obtain and process information fairly• Keep it only for one or more specified and lawful purposes• Process it only in ways compatible with the purposes for which it was given to
you initially• Keep it safe and secure• Keep it accurate and up-to-date• Ensure that it is adequate, relevant and not excessive• Retain it no longer than is relevant for the specified purpose or purposes• Give a copy of his/her personal data to any individual on request
DRI Presentation
How researcher/archive usually handle data protectiono Informed Consent, usually including• Information about purpose of research• Agreement about who will obtain access to data and
on what conditions• Right to withdraw from research/privacy
o Anonymisation/pseudonymisation of identifierso Removal of sensitive information if necessary
DRI Presentation
Research Data and Data ProtectionCurrent repository practices based on two understandings: 1. Anonymized data normally no longer considered ‘personal
data’ and therefore not subject to data protection legislation2. Limitations on further processing and ‘right to be forgotten’
appear not to apply to data kept for statistical, research or other scientific purposes - provided fundamental rights and freedoms of data subjects preserved
DRI Presentation
Some Challenges Likely to be Faced by DRILegacy Data
• Applying data protection principles to older studies that may not have been collected with modern ethical/data protection principles in mind
New data types = raises new challenges (amplifies pre-existing legal and ethical concerns)• Administrative data such as health information, financial information• Linking data, in particular linking research and administrative data • Paradata • Internet data sources incl. social media data, text within websites
