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Inside the Matrix
Online Data Collection and Privacy
Barry Ryan
Director, Policy & Communication
Data Pioneers– 26 September 2012
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We are efamro
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The Global Research Business Network
ARIA-EFAMRO-APRC

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Data Protection 101
• Data:
– means information which is processed by
means of equipment operating automatically
• Personal Data:
– any information relating to an identifiable,
living person
• Processing:
– obtaining, recording, holding, transferring,
altering, retrieval etc

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Data Protection in the Matrix
• The online world is created entirely from data
• In that data will be personal data.
• Data Protection Law applies immediately.
• Key issue:
– What is the fair and lawful basis for
processing data?

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Research practice vs. reality?
• Young people don’t care about privacy
• Anonymity is no longer a relevant
consideration
• Users of social networks are displaying
information to the world that researchers
should be free to harvest and use

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Expectations of Users
• Each site has their own terms of use
• Access may be open or limited to age groups
• Information supplied may be public or limited to
sub-networks or friends
• See Facebook terms
• http://www.facebook.com/terms.php?ref=pf

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Copyright
• Exists from moment of creation by author
• Literary works – blog posts, profiles, updates
• Photographs
• Video Clips
• Sound recordings
• Taking of information without permission of
author is a breach
• Remedy – injunction, damages

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“This is public information”
• Directive 95/46/EC
• Wet bescherming persoonsgegevens
– No distinction between public and private
– What is the purpose for which the personal
data has been released?

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“People want to be heard”
• Yes, but…
• Always or for a limited time?
• By an audience or by everyone?
• In DPA-speak: What is the purpose for which
personal data has been released?
– Twitter?
– Facebook?
– Patientslikeme?

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“but we mask the identity…”
• Masking makes sense in regards to issues of
harm
• But does not solve issue of possible unlawful
collection

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“we are collecting sentiment...”
• Great!
• What do you need to do that?
• Mentions?
• Positive/negative?
• Context?
• Principle of data minimisation

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The Future
• Single law for data protection by 2014 2015
2016(?)
• General Regulation proposed by Commission
– No more national laws
• Currently being debated by MEPs and Council of
Ministers
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Research watch list
• Consent – specific and explicit
– A single consent standard
– “Explicit” ≠ “Written”
• Changes in responsibility of controller
– Reduction in formalities
– One stop shop
– Forum shopping (choose your regulator?)
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Research watch list
• Profiling
– Making automatic decisions about individuals
– Advertising and Credit Scoring
– Sampling or Media Measurement?
• Children
– Special considerations for under 18s
– Parental consent for under 13s
– MEPs will try to move age upwards
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Research watch list
• Existing Exemptions
– Historical, Statistical and Scientific
– Commercial v Academic?
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Questions?
• Barry Ryan
• T : +32 (0)2 550 3548
• E : barry.ryan@efamro.eu
• W : www.efamro.eu
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