Ethics and Legal Compliance:Informed Consent and Data Licensing
Libby Bishop 
Research Data Management section (Producer Support)
UK Data Archive
Sebastian Netscher
CESSDA Training at the Data Archive for the Social Sciences
GESIS - Leibniz Institute for the Social Sciences
@CESSDA_Data
This work is licensed under  Creative Commons Namensnennung 4.0 International Lizenz.
Informed Consent
Research
Study 
planning
Data 
collectionData analysis
Archiving & 
registering
Informed Consent
• Getting agreement from your participants 
to participate in your study
• Weak consent will lead 
to poorer data because
participants may try to 
protect themselves 
⇒ causes item (sensitive data) 
or even unit non-response Image: picxabay (CC-0)
EU-Directive 1995/46/EC
• Participants in research have the right to:
–withdraw from participation
– access their data
– get information about 
the use of their data
• Always obtain freely 
given consent
• Personal data need 
special protection
– have to be stored in the EU
– have to be anonymized
– personal data need special protection
Image by P. Hochstenbach ( CC-by)
The Elements of Consent Forms
• Informed consent includes information on:
–project and the researcher(s)
–participation in the study
–use of information 
• within the project
• beyond the project
–protection of personal data, 
e.g. via anonymization
– right to 
• withdraw 
• access personal information
• Can be given written form (favourable) or verbally
Image: pixabay (CC-0)
Germany – a leader in data privacy
• Recent Safe Harbour deemed 
to violate “respect for private life”
• 1880’s – German courts & “personality”
• U.S. and U.K.: freedom vs. tyranny
Germany: freedom vs. determinism (inner)
• 1983 Census (BVerfGE 65,1 [41])
– “informational self-determination” 
– absolute protection for “core area of life formation”
Anonymization
Research
Study 
planning
Data 
collectionData analysis
Archiving & 
registering
• Strategy to protect the identity of participants 
– legal requirements, e.g. EU-Directive 1995/46/EC
– ethical reasons (protection from harm) 
• Identifying participants
– direct identifiers, e.g. names, addresses, pictures etc.
– indirect identifiers, i.e. combination of different 
information in the data
• Anonymization is an early task (study planning)
– types of data to collect
– data protection laws
Anonymization
• Direct identifiers 
– keep sensitive data on separate files
– use meaningful pseudonyms and replacements 
– remove variables with sensitive data 
– voice alteration or image blurring
• Indirect identifiers 
– restrict upper and lower ranges of variables
– low-level aggregation of data
Anonymization Strategies
• Document anonymization and changes 
undertaken
• Avoid 
– inconsistency 
– over-anonymization
• If anonymization is impossible
– obtain informed consent for using 
and sharing non-anonymous data
– control access and regulate reuse
– place confidential data under embargo
Image by A. Herrema & H. Bouwteam  (CC-by)
Anonymization: Keep in Mind
Intellectual 
Property Rights 
and 
Data Licensing 
Research
Study 
planning
Data 
collectionData analysis
Archiving & 
registering
Intellectual Property Rights
• Intellectual Property Rights (IPR)
– cover scientific work 
– do neither extend to an idea nor subsist in facts
– but to an organized collection of data 
(EU Directive 2001/29/EC)
• IPRs are not universal
– vary from country to country
– are territorial
⇒ it matters where they are applied 
not where they originate
Reusing Data
• Copyright 
– assigns the owner of IPR 
protects against unauthorized 
copies or derivatives of work
• The right of usage
– defines conditions of reused
⇒ reusing data, 
clarify conditions, first
Image by A. Herrema & H. Bouwteam  (CC-by)
Licensing Data
• Give permission to someone else 
to reuse data 
• To license data
– clarify who owns the data, first
– check for template license 
of your institute or funder
• Licenses can be 
– irrevocable and 
– not suitable for third party licensing 
or for confidential, sensitive objects etc.
Image by A. Herrema & H. Bouwteam  (CC-by)
• Licenses define conditions of reuse
• Extract of UKDA end user license
http://ukdataservice.ac.uk/get-data/how-to-access/conditions  
– not to use the data for commercial purposes …
–… no transfer of any interest in intellectual property
–… without warranty or liability of any kind
–… ensure that the means of access … are kept secure 
–… use the correct methods of citation … in publications
–… abide by any further conditions notified to yoy
e.g. access conditions for weakly anonymized data
What Licenses Look Like
Further Reading
• ANDS Guides (2012): Ethics, Consent & data Sharing. Available at: 
http://www.ands.org.au/guides/ethics-working-level.pdf.
• Ball, Alex (2014): How to License Research Data. Available at: 
http://www.dcc.ac.uk/resources/how-guides/license-research-data.
• Creative Commons. Available at https://creativecommons.org/.
• Directive 95/46/EC of the European Parliament and of the Council, 24 October 1995. Available 
at:  http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=CELEX:31995L0046:EN:NOT.
• Lagoze, C., Block, W.C., Williams, J., Abowd, J. and Vilhuber, L. (2013): Data Management of 
Confidential Data. doi:10.2218/ijdc.v8i1.259 . Available at: 
http://www.ijdc.net/index.php/ijdc/article/view/8.1.265.  
• McGeever, Mags (2007): IPR in Databases. Available at 
http://www.dcc.ac.uk/resources/briefing-papers/legal-watch-papers/ipr-databases#top.
• Open Data Commons. Available at http://opendatacommons.org/.
• UK Data Service: Consent for data sharing: 
http://ukdataservice.ac.uk/manage-data/legal-ethical/consent-data-sharing/consent-forms 
[Examples on various consent forms].
DMP Section 4: Ethics and …
 Work in 2-4 groups, 
 Time: about 30 minutes
Choose one of the 
following topics
 For more detailed 
information have a look at 
the exercise sheet in your 
folder
 At the end, we will ask 
participants to briefly 
present their results 
DMP Sections 4: Ethics and …
a) Informed consent (Section 4.1)
–develop a basic structure for the consent form, 
considering…
…which information will be provided
… how the handling of sensitive data and the question of 
data sharing will be addressed
…when informed consent will be obtained
b) Data licensing (Section 4.2)
– review creative commons licenses in the context of data 
licensing, discussing pros and cons of doing so
a) Informed Consent: Information Sheet
• Provide information on separate sheet:
– aim of your project and importance of participation 
– name of researcher(s), institute(s) and 
contact information 
– use of data within the project as well as 
beyond the project (archiving and sharing)
– protection of sensitive information, 
e.g. via anonymization
– right to withdraw, access the data etc.
⇒Hand over to participants
a) Informed Consent: Consent Form
• Seek informed consent in written form
• Get the consent form signed and hand over a copy to 
participants, including information on:
– implication of participation
– use of data within the project as well as beyond the project 
(archiving and sharing), taking use cases into account, e.g. citing 
participants with their real name in publications
– name of participant as well as 
name of primary researcher(s) and contact information
⇒ Keep consent form stored securely
b) Licensing
• Check consent form on data sharing, first
• Creative Commons (CC) Licenses:
– pros:
• easy-to-use
• standardized way to give the public permission
• enable sharing and use of (creative) works
– cons: 
• no controlled access and (non-commercial) use 
• do not cover “copylefts”
• attribution stacking
⇒ CC-Licenses are not designed for (sensitive) data