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 QualidataUK Data Archive

Focus• Ethical issues in the use of research data

– 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:– 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– 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;– 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 1Applies 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 2Personal 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…

– 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• 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]