Ethical issues surrounding the use of research data

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 – – – 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 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… – – 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/Working. Papers/2006/0706_anonymising_research_data. pdf] • Data protection Act 1998 [http: //www. uklegislation. hmso. gov. uk/acts 1998/ ukpga_19980029_en_1] • ESRC Research Ethics Framework [http: //www. esrcsocietytoday. ac. uk/ ESRCInfo. Centre/Images/ESRC_Re_Ethics_Frame_tcm 6 -11291. pdf] • Freedom of Information Act 2000 [http: //www. opsi. gov. uk/acts 2000/ukpga _20000036_en_1] • Human Rights Act 1998 [http: //www. opsi. gov. uk/acts 1998/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]