Ethical issues surrounding the use of
research data: an archivists perspective
Research Ethics Workshop
“Key ethical issues for Social Science research”
Sheffield, 19 March 2008
John Southall
ESDS Qualidata
UK Data Archive
Focus
• Ethical issues in the use of research data
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The place of confidential research data
The link between creation and use of data
Legislation
Informed consent
Practical needs
• Ethical issues in managing and sharing data:
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Primary research data use
Data use in research teams and departments
Data re-use removed from its creators
Data archiving
Data publishing
Confidential data are…
• Data that can be easily connected to the person
providing them
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Directly or indirectly identifying information:
Names, addresses, occupation,
Sensitive data that incriminate participant or third party,
Photographs, etc.
• Data given in confidence or data agreed to be kept
confidential (secret) between 2 parties that is not in
the public domain
– Information on business, income, health, medical details,
opinion, etc.
• Conditioned by a number of factors
– Ethical guidelines
– Legal requirements
– Research specific consent agreements
Research ethics in data creation
The researcher has;
• duty of confidentiality towards participants
• duty to protect participants from harm
• duty to treat participants as intelligent, capable
and able to make their own judgements and
decisions
• Duty to explain the aims of the research
• duty to inform participants how information and
data obtained will be used in the short-term
• Others may be identified…
Research ethics in data use
The Researcher has;
• duty to inform participants how data obtained will
be used in the long-term;
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Processed
Added to a database
More widely shared
Disposed of, etc.
• Duty of use to accurately reflect the information
gathered
• duty to wider society to make available resources
produced with public funds (e.g. data sharing
required by research councils).
• Others may be identified…
The role of legislation
• Data Protection Act (1998)
• Freedom of Information Act (2000)
• Human Rights Act (1998)
(Article 8 – right to respect for private and family life)
• Statistics and Registration Services Act (2007)
• Geared towards the commercial creation and use of
data
• Data Protection Act most relevant for academia
• Shift towards encouraging usage
Data Protection Act 1
Applies only to personal data
– Not to all research data
– Not to all confidential data
Personal data;
• relate to a living individual
• the individual can be identified from those data
• includes any expression of opinion about the
individual
Data Protection Act 2
Personal data should be;
• processed fairly / lawfully
• obtained for a specified purpose and people
informed about what will happen to their data
• kept safe and not kept longer than necessary
• open for inspection by the provider
• only disclosed if consent has been given to do so
If data e.g. anonymised then the Act will not apply as
this no longer constitutes ‘personal data’.
Ministry of Justice Data Sharing Review
(http://www.justice.gov.uk/reviews/datasharing-intro.htm)
Ethical foundations of sharing
research
What are some immediate options?
• Obtaining informed consent where possible
• Involve participants in data creation
• Protect identity (one option is anonymisation)
• Restrict access to research data
• Ensure any undertakings continue to be honoured
• Bridge the stages of data creation and data use
Foundations of consent
• Need to balance…
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Aims of research
Best interests of participants
Obligations to wider audiences
The demands of field research
What can participants consent to?
• Engagement in the research process
– Who approves transcripts?
• Use of their data / materials in various outputs,
presentations, publications
– Who approves research outputs?
– Outputs cannot always be anticipated fully
• Data sharing and archiving
– Sharing and archiving cannot always be fully anticipated
– Are participants interested in such distinctions?
Is informed consent possible?
• Active and legitimate debate about this but…
• “no” is not a viable answer in the current research
environment
Final thoughts
• See informed consent as a bedrock of any project
• Recognise the ethical demands of projects will vary
on a case by case basis
• Currently there is a drive towards data sharing
(national & international)
• Better guidelines, technologies and support for
researchers to enable data sharing, especially where
confidential data are involved are needed
• But… avoid draconian solutions
• Protect participants but also accurately reflect
contributions
Resources
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British Sociological Association
[http://www.britsoc.co.uk/equality/Statement+Ethical+Practice.htm]
British Sociological Association - Visual Sociology Group – Ethical guidelines
[http://www.visualsociology.org.uk/about/ethical_statement.php]
Clark, A. 2006. Anonymising research data. NCRM Working Paper Series 7/06. ESRC
National Centre for Research Methods. [http://www.ncrm.ac.uk/research/outputs/
publications/WorkingPapers/2006/0706_anonymising_research_data.pdf]
Data protection Act 1998 [http://www.uklegislation.hmso.gov.uk/acts/acts1998/
ukpga_19980029_en_1]
ESRC Research Ethics Framework [http://www.esrcsocietytoday.ac.uk/
ESRCInfoCentre/Images/ESRC_Re_Ethics_Frame_tcm6-11291.pdf]
Freedom of Information Act 2000 [http://www.opsi.gov.uk/acts/acts2000/ukpga
_20000036_en_1]
Human Rights Act 1998 [http://www.opsi.gov.uk/acts/acts1998/ukpga_19980042_en_1]
Methodological Issues in Qualitative Data Sharing and Archiving
[http://www.cardiff.ac.uk/socsi/hyper/QUADS/index.html]
National Centre for Research Methods - informed consent project [http://www.
southampton.ac.uk/socsci/sociology/research/projects/informedcontent.html]
Oral History Society guidelines [http://www.ohs.org.uk/ethics/]
Research ethics in art, design, media [http://www.biad.uce.ac.uk/ research/rti/ethics/]
Social Research Association [http://www.the-sra.org.uk/ethical.htm]