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1. 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
UK Data Archive
2. Focus Ethical issues in the use of research data
The place of confidential research data
The link between creation and use of data
Ethical issues in managing and sharing data:
Primary research data use
Data use in research teams and departments
Data re-use removed from its creators
3. Confidential data are? Data that can be easily connected to the person providing them
Directly or indirectly identifying information:
Names, addresses, occupation,
Sensitive data that incriminate participant or third party,
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
Research specific consent agreements
4. 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?
5. Research ethics in data use The Researcher has;
duty to inform participants how data obtained will be used in the long-term;
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?
6. 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
7. Data Protection Act 1 Applies only to personal data
Not to all research data
Not to all confidential data
relate to a living individual
the individual can be identified from those data
includes any expression of opinion about the individual
8. 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)
9. 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
10. Foundations of consent Need to balance?
Aims of research
Best interests of participants
Obligations to wider audiences
The demands of field research
11. 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?
12. Is informed consent possible? Active and legitimate debate about this but?
?no? is not a viable answer in the current research environment
13. 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
14. Resources 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]