ETHICAL AND EPISTEMOLOGICAL ISSUES IN RE-USING QUALITATIVE DATA

1. ………………………………………….................................................................................................…………………………………………................................................................................................. ETHICAL AND EPISTEMOLOGICAL ISSUES IN RE-USING QUALITATIVE DATA LIBBY BISHOP …………………………………. SENIOR RESEARCHER LIAISON UK DATA ARCHIVE UNIVERSITY OF ESSEX …………………………………. WORKSHOP ON RE-USING QUALITATIVE DATA IQDA - UNIVERSITY OF IRELAND, MAYNOOTH 22 JUNE 2012

2. THE UK DATA ARCHIVE & ESDS QUALIDATA forty years’ experience in selecting, ingesting, curating and providing access to social science data ESDS Qualidata (350 collections) free to access and use the data workshops on how to use collections, data management, secondary analysis and more.

3. WHY RE-USE DATA? http://www.livingandworkingonsheppey.co.uk/ To foster scholarly collaboration across generations

4. COMBINING OLD DATA WITH NEW 1978:142 essays from both male and female students ‘Living without a job: how school leavers see the future’ published in New Society in 1978 (2 November, pp 259-62). 2009-10: The exercise was repeated by the Living and Working on Sheppey project and 110 essays (55 boys and 55 girls) were gathered from school pupils and members of youth groups on the Isle of Sheppey to compare to the earlier ones. (Crow et al. 2012; Weddell et al. 2012).

5. IMAGINING WORK: 1978 and 2012 1978: Mundane jobs. Gradual career progression. Unemployment. “It was hard finding a job, I failed a few chances, but eventually got what I wanted locally, a craft apprenticeship” (Essay 27, male) “I longed for something exciting and challenging. But yet again I had to settle for second best. I began working in a large clothes factory” (Essay 104, female) 2010: Well-paid, instantaneous jobs. Choice but uncertainty. Influence of celebrity culture. “I arrive at my 3-bedroom luxury villa; I land my helicopter on my own heli-pad and walk inside. I grab my keys and jump in my Bentley Continental GTS.” (Essay 40, male) “In my future I want to become either: a dance teacher, hairdresser, or a Professional Show Jumper/horse rider. If I do become a dancer my dream would be to dance for Beyoncé or someone really famous” (Essay 61, female)

6. THE ETHICAL CASE FOR RE-USE Public and funders - to be, and appear to be, open and accountable Scholarly community - transparency; trustworthiness Research participants avoids duplicative, expensive data collection from the vulnerable, hard-to-reach (e.g. ill, elites) enables participants’ contribution to research to be used as widely as is ethically possible

7. ETHICAL QUESTIONS ABOUT DATA RE-USE • how can consent for unknown purposes be informed? • does sufficient anonymisation for re-use damage data quality? • who owns the data? legal and moral rights • does archiving data increase risk of misuse?

8. CONSENT FOR DATA SHARING • all consent is partial: if full information were possible, research would not be needed • ask participants for consent to share their data • range of possible uses, with examples • what is a data archive and how does it work? • Timescapes – 95+%; Finnish case – 98% agreed • retrospective consent possible, if costly (foot & mouth) • enduring consent – for unspecified procedures (MRC) • no time limits; no re-contact required • 99% agreed (2500+ patients) – Wales Cancer Bank • “wish to advance science” Kuula (2012) • secondary use still subject to ethical review

9. ANONYMISING QUALITATIVE DATA • plan or apply editing at time of transcription except: longitudinal studies - anonymise when data collection complete (linkages) • avoid blanking out; use pseudonyms or replacements • avoid over-anonymising - removing/aggregating information in text can distort data, make them unusable • consistency within research team and throughout project • identify replacements, e.g. with [brackets] • keep anonymisation log of all replacements, aggregations or removals made – keep separate from anonymised files • usually not preferred for audio, image and video

10. CONTROL ACCESS TO DATA users must register with UK Data Archive, Timescapes, et al. and sign End User Licence embargo periods for selected sensitive or disclosive data – permission from data depositor Secure Data Service (parts of Understanding Society, wealth and skills data) Obtaining consent, anonymising and controlling access enables most data to be shared

11. RISKS OF MIS-USE IN RE-USING DATA • some risk is unavoidable • researchers’ reputations • senior (Bornat 2003; Edwards 20xx; Savage 2005) • participants’ views or opinions misrepresented • what if another researcher interprets “my” participants’ words differently? • “an encoded account only decipherable to the individual who collected it” (Broom et al. 2009) • the non-feminist grandmother (Borland 2006) • journalists and duties as public intellectuals?

12. ARCHIVED DATA CAN RESTORE REPUTATION In 1996 Martin Orans examined Mead's notes preserved at the Library of Congress, and credits her for leaving all of her recorded data available to the general public. Orans concludes that Freeman's basic criticism, that Mead was duped by ceremonial virgin Fa'apua'a Fa'amu (who later swore to Freeman that she had played a joke on Mead) was false for several reasons: first, Mead was well aware of the forms and frequency of Samoan joking; second, she provided a careful account of the sexual restrictions on ceremonial virgins that corresponds to Fa'apua'a Fa'amu's account to Freeman, and third, that Mead's notes make clear that she had reached her conclusions about Samoan sexuality before meeting Fa'apua'a Fa'amu. He therefore concludes, contrary to Freeman, that Mead was never the victim of a hoax. As Orans points out Mead's data supports several different conclusions, and that Mead's conclusions hinge on an interpretive, rather than positivist, approach to culture.[18] (Source – Wikipedia – needs to be checked)

13. WHO OWNS THE DATA? “But it’s also the notion of intellectual property, isn’t it? Whose intellectual property is that stuff there? We say it’s – we put our stamp on it, it’s our intellectual property.” “I’m sorry [laughs] I don’t agree with that. I think there’s – I mean I see research as being a public benefit. It’s publicly funded; it’s for public benefit. I also see research as being intrusive and demanding of the participants and so therefore what the participants record … is of value and I think archiving it, even if it had a 30 year embargo on it, is actually paying respect to what people have said and building up a stock of the world’s knowledge.” (Broom et al. 2009)

14. CONTEXT DEBATE: QUALITATIVE DATA The argument against re-using data: • context is essential for interpreting qual data • anyone conducting SA lacks the context known by the primary researcher(s), “head-notes” • thus all SA is inevitably flawed or limited because of this lack of contextual information (Mauthner-several)

15. THE CONTEXT DEBATE: RESPONSE True, identical context is, by definition, not available as secondary researcher “was not there”, but… • context is ALWAYS partial (transcription to audio to video) • essential context depends on the research question (CA) Must distinguish: data v. evidence (Hammersley SRO 2010) • “data as given” v “data as constructed” = evidence • access to context (‘head notes’) may give primary researcher more privileged relationship to some “data as given”, but • does NOT imply privileged relationship to evidence, interpretation (Irwin and Winterton 2011) Archival practice: provide context and acknowledge its limits

16. QUALITATIVE STUDY Data listing provides an at-a-glance summary of data collection

17. CONCLUSION Context is an issue for primary analysis and secondary analysis, but more of a challenge for secondary • comprehensive documentation is desirable • resources of primary researchers are limited • impossible to provide context for unknowable future uses • successful models exist that balance these criteria Suggestions on levels and forms of context • UK Data Archive www.data-archive.ac.uk/create-manage/document/study-level • Timescapes • http://www.timescapes.leeds.ac.uk/data-archive/archiving-guidance.php

18. SELECTED REFERENCES ON REUSE Bishop, L. (2009) 'Ethical sharing and re-use of qualitative data', Australian Journal of Social Issues, 44(3). http://www.data-archive.ac.uk/media/249157/ajsi44bishop.pdf(see this article for references in this presentation). Bornat, J. (2003) 'A second take: revisiting interviews with a different purpose', Oral History, Spring, pp. 47-53. Corti, L., Witzel, A. and Bishop, L. (2005) 'Secondary analysis of qualitative data', Forum Qualitative Sozialforschung/Forum: Qualitative Social Research [Online journal], 6(1). Crow, G., Morgan Brett, B., Winterton, M., (Eds) (2011) 'Young Lives and Imagined Futures: Insights from Archived Data', Timescapes Working paper. Hinds, P., Vogel, R. and Clarke-Steffen, L. (1997) 'The possibilities and pitfalls of doing a secondary analysis of a qualitative data set', Qualitative Health Research, 7(3), pp. 408-424. Irwin, S. and Winterton, M. (2011) ‘Debates in Qualitative Secondary Analysis: Critical Reflections’, Timescapes Working Paper Series, No. 4. Irwin, S. and Winterton, M. (2011) ‘Timescapes Data and Secondary Analysis: Working across the Projects’, Timescapes Working Paper Series, No. 5. Lyon, D., Morgan Brett, B., and Crow, G., (2012 forthcoming) 'Working with Material from the Sheppey Archive: Exploring Formal and Contextual Data' in Special Issue of International Journal for Social Research Methods: Perspectives on Working with Archived Textual and Visual Material. Johnson, J., Rolph, S., and Smith, R., (2010) Residential Care Transformed: Revisiting “The Last Refuge”, Hampshire: Palgrave. Johnson, J., Rolph, S., and Smith, R., (2007) ‘Revisiting “The Last Refuge”: Present day methodological challenges’ in Bernard, M. and Scharf, T. (eds) Critical Perspectives on Ageing Societies, Bristol: Policy Press, pp. 89-104. Savage, M. ‘Revisiting Classic Qualitative Studies’, Forum: Qualitative Social Research (FQS), Volume 6, No. (1), January 2005 Weddell, E., Lyon, D., Crow, G., Morgan Brett, B., (2012 forthcoming) 'Imagining the Future: What can the aspirations of school-leavers in 1978 and 2010 tell us about the changing nature of society?' Sociology Review. .

19. OUR DATA MANAGEMENT SERVICES UK Data Archive Research Data Management Support Services datasharing@data-archive.ac.uk Economic and Social Data Services www.esds.ac.uk/aandp/create RELU-Data Support Service relu.data-archive.ac.uk ESRC Research Development Initiative Training Programme www.data-archive.ac.uk/create-manage/projects/rdi-dm JISC Data Management Planning project www.data-archive.ac.uk/create-manage/projects/jisc-dmp

20. CONTACT UK DATA ARCHIVE UNIVERSITY OF ESSEX WIVENHOE PARK COLCHESTER ESSEX CO4 3SQ ……………………….…………………….…. T:+44 (0)1206 872140 E: ebishop@essex.ac.uk W: www.data-archive.ac.uk ……………………………….………………..