Data sharing: Legal and ethical issues

Slides from a webinar delivered to OU researchers 19/02/2019

1. Data Sharing: legal and ethical
issues
19th February 2019
Dan Crane, Research Support Librarian
[email protected]

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http://www.open.ac.uk/library-research-support/

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WHAT WE’LL COVER
•Rights and data sharing
•Ethics and data sharing
•Re-using data
•Questions/further information

4. WHAT IS DATA
SHARING?

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DATA SHARING: HOW, WHAT AND WHY?
What is data sharing?
•Supporting publication or end of project
•In a trusted repository
•With metadata
•As open as possible​
•Available for 10 years​
•Discoverable, accessible,citeable
•With a licence
•Data access statement inpublications

6. RIGHTS AND DATA
SHARING

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DATA SHARING: LEGAL AND ETHICAL ISSUES
Rights and data sharing
•one of the main types of intellectual property (someone’s
ownership over the things they create). It allows the
copyright owner to protect against others copying or
reproducing their work.
•it arises automatically when a work that qualifies for
protection is created. The work must be original, meaning
it needs to originate with the author, who will have used
some judgement or skill in its creation.
Copyright
https://www.cla.co.uk/what-is-copyright

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DATA SHARING: LEGAL AND ETHICAL ISSUES
Rights and data sharing
Copyright applies to:
•Original literary, dramatic, musical and artistic works
•Sound recordings, films, broadcasts
•The typographical arrangement of publications
•NOTfacts
Note:data collected via recorded/transcribed interviews –
researcher holds copyright of recordings and transcripts, but
each speaker is author of his/her own words.
See: https://www.ukdataservice.ac.uk/manage-data/rights

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DATA SHARING: LEGAL AND ETHICAL ISSUES
Rights and data sharing
Database rights
Database rights apply when
there has been substantial
intellectual investment in
obtaining, verifying or
presenting content in an original
manner

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DATA SHARING: LEGAL AND ETHICAL ISSUES
Rights and data sharing
Open licences
How do you want your data to be re-used?
Other options should be
considered for databases
and software.

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DATA SHARING: LEGAL AND ETHICAL ISSUES
Rights and data sharing
Freedom of Information
Be prepared...

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DATA SHARING: LEGAL AND ETHICAL ISSUES
Rights and data sharing
Freedom of Information
•Research data can be the subject of FoIrequests
•Must be provided unless an exemption or exception allows your
institution not to disclose it
•Could be addressed to anyone in the organisation
•Only 20 working days to respond
Exemptions:
•Accessible by other means
•Contains personal data
•Subject to a duty of confidentiality
•Release would prejudice legitimate commercial interests
•Intended for future publication (but must be the data, not a paper
based on the data)

13. ETHICS AND DATA
SHARING

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Ethics and data sharing
DATA SHARING: LEGAL AND ETHICAL ISSUES
You may have heard…
GDPR is the General Data Protection Regulation
•Replaced Data Protection Act 1998
•EU wide
•Came into force 25
th
May 2018
•Reflects how society communicates and collects information
GDPR image: used under Creative Commons https://pixabay.com/en/legislation-gdpr-protection-privacy-3231548/

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Ethics and data sharing
DATA SHARING: LEGAL AND ETHICAL ISSUES
What is personal data? -any information relating to an identifiable
person who can be directly or indirectly identified.
“This definition provides for a wide range of personal
identifiers to constitute personal data, including name,
identification number, location data or online identifier,
reflecting changes in technology and the way organisations
collect information about people.”
(ICO Key Definitions)
Strengthens the rights of data subjects, including:
•The right to be informed
•The right of access
•The right to erasure (to be forgotten)
•The right to data portability

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Ethics and data sharing
•Legal: See ‘OU Data protection procedures’ and start with the
DPIA screening questions
Link to intranet (requires log-in) http://intranet6.open.ac.uk/governance/data-protection/
Working with personal data?
•Ethical: See Human Research ethics guidance and the ‘HREC
Project Registration and Risk Checklist’
Link to website http://www.open.ac.uk/research/ethics/human-research
DATA SHARING: LEGAL AND ETHICAL ISSUES

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DATA SHARING: LEGAL AND ETHICAL ISSUES
Ethics and data sharing
Information sheets and consent forms should cover:
•The purpose of the research and nature of participation
•How confidentiality will be maintained
(anonymisation/pseudonymisation?)
•Options for varied consent conditions for participation,
publication and data sharing
•How research data will be stored and preserved in the
long-term
•How data may be used for future research or teaching
and any restrictions on that use
For more information see the UK Data Archive & OU HREC:
https://www.ukdataservice.ac.uk/manage-data/legal-ethical/consent-data-sharing
UK Data Service model consent form
https://www.ukdataservice.ac.uk/manage-data/legal-ethical/anonymisation
http://www.open.ac.uk/research/ethics/human-research/faqs

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DATA SHARING: LEGAL AND ETHICAL ISSUES
Ethics and data sharing
In short:
•Inform participants about what you are doing and why you are
doing it: explain what information will be gathered, whether and
how any identifying information will be removed, and how the
data will managed and used during and after the project.
•Request consent for taking part and use of the data at a granular
level, allowing participants to consent, or not, to each use –
including data sharing
•At a minimum, consent forms should not preclude data sharing,
such as by promising to destroy data unnecessarily
•Retain documentation of consent as long as you have the data
•Store, manage and archive your data in a way that protects
personal data

19. RE-USING DATA

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Re-using data
DATA SHARING: LEGAL AND ETHICAL ISSUES
Consider...
•Discovery
•Access
•Citation
•Cost
•Licensing

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Re-using data
DATA SHARING: LEGAL AND ETHICAL ISSUES
Where to look...
•Disciplinary data archives (e.g. UK Data
Archive)
•Re3data
•Datacite
•British Library
•Google Dataset Search
•‘Associated data’ in Scopus, WoSetc.
•Data access statements in papers

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Re-using data
DATA SHARING: LEGAL AND ETHICAL ISSUES
Prepare for...
•Data interpretation
•Data cleaning

23. QUESTIONS & USEFUL
RESOURCES

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QUESTIONS & USEFUL RESOURCES
QUESTIONS?

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How we can help
QUESTIONS & USEFUL RESOURCES
•Open Research Data Online (ORDO)
•Help with Data Management Plans and consent forms
•Advice on preparation of data for sharing
•Online guidance
•Enquiries
Email: [email protected]

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Links
USEFUL RESOURCES
•The OU Library Research Support website: http://www.open.ac.uk/library-
research-support/research-data-management
•Open Research Data Online (ORDO): https://ordo.open.ac.uk
•Digital Curation Centre: http://www.dcc.ac.uk/
•DMP Online: https://dmponline.dcc.ac.uk/
•UK Data Archive: http://www.data-archive.ac.uk/
•MANTRA: http://datalib.edina.ac.uk/mantra/
•CESSDA ERIC training:https://www.cessda.eu/Research-
Infrastructure/Training/Expert-Tour-Guide-on-Data-Management
•OU Human Research Ethics
Committee:http://www.open.ac.uk/research/ethics/
•OU Data Protection:http://intranet6.open.ac.uk/governance/data-
protection/advice-and-resources(if clicking on the link doesn’t work, copy
and paste the address)
•OU Information Security:http://intranet6.open.ac.uk/it/main/information-
security(if clicking on the link doesn’t work, copy and paste the address)

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FEEDBACK
How did we do?
Before you go, please fill out our very short feedback form to
tell us:
•One thing you liked about today's session
•One thing you would change
Use the paper form, or online form at:https://bit.ly/2EZu0K6

28. THANK YOU

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IMAGE CREDITS
Unless otherwise stated, all images are by
Jørgen Stamp at http://www.digitalbevaring.dk