Abstract
In this chapter we present two cautionary tales from our research in the UK National Health Service. We reflect on our experience of conducting qualitative health research within systems that appear to be designed to ethically govern biomedical research. We show how Good Clinical Practice (GCP) training presumes all researchers only need to be familiar with clinical trials. Then we reveal how some of our participants reported feeling abused when they read a transcript representing their colloquial speech. The research ethics committee monitoring form asked about adverse events in a way that considered risks to bodily harm, so this instance of harm went unrecorded. We consider the implications of ‘ceremonial conformity’ and conclude that systems need to better reflect the realities of fieldwork ethical dilemmas.
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References
Aldred, R. (2008). Ethical and political issues in contemporary research relationships. Sociology, 42(5), 887–903. https://doi.org/10.1177/0038038508094568
Alldred, P., & Gillies, V. (2012). Eliciting research accounts: Re/producing modern subjects? In T. Miller, M. Birch, M. Mauthner, & J. Jessop (Eds.), Ethics in qualitative research (2nd ed., 140-165), London: Sage.
Armstrong, N., Dixon-Woods, M., Thomas, A., Rusk, G., & Tarrant, C. (2012). Do informed consent documents for cancer trials do what they should? A study of manifest and latent functions. Sociology of Health & Illness, 34(8), 1230–1245. https://doi.org/10.1111/j.1467-9566.2012.01469.x
Bentley, C., & Enderby, P. (2005). Academic medicine: Who is it for? British Medical Journal, 330(7487), 361. https://doi.org/10.1136/bmj.330.7487.361
Berger, P. L., & Luckmann, T. (1990). The social construction of reality: A treatise in the sociology of knowledge. New York: Anchor Books.
Bergman Blix, S., & Wettergren, Å. (2015). The emotional labour of gaining and maintaining access to the field. Qualitative Research, 15(6), 688–704. https://doi.org/10.1177/1468794114561348
Buchanan, D., Boddy, D., & McCalman, J. (1988). Getting in, getting on, getting out and getting back. In A. Bryman (Ed.), Doing research in organizations (pp. 53–67). Routledge: London.
Carter, P. (2011). Governing welfare reform symbolically: Evidence based or iconic policy? Critical Policy Studies, 5(3), 247–263. https://doi.org/10.1080/19460171.2011.606298
Corden, A., & Sainsbury, R. (2006). Exploring “quality”: Research participants’ perspectives on verbatim quotations. International Journal of Social Research Methodology, 9(2), 97–110. https://doi.org/10.1080/13645570600595264
Cresswell, J. W. (2003). Research design: Quantitative, qualitative and mixed methods approaches. Thousand Oaks, CA: Sage.
Dingwall, R. (2006a). An exercise in fatuity: Research governance and the emasculation of HSR. Journal of Health Services Research and Policy, 11(4), 193–194. https://doi.org/10.1258/135581906778476580
Dingwall, R. (2006b). Confronting the anti-democrats: The unethical nature of ethical regulation in social science. Medical Sociology Online, 1(1), 51–58. http://www.medicalsociologyonline.org/resources/MSo-%26-MSN-Archive/MSo_v.1/MSoVol01Issue1.pdf#page=56
Dingwall, R. (2008). The ethical case against ethical regulation in humanities and social science research. Twenty-First Century Society, 3(1), 1–12. https://doi.org/10.1080/17450140701749189
Dixon-Woods, M., Fitzpatrick, R., & Roberts, K. (2001). Including qualitative research in systematic reviews: Opportunities and problems. Journal of Evaluation in Clinical Practice, 7(2), 125–133. https://doi.org/10.1046/j.1365-2753.2001.00257.x/full
Forbat, L., & Henderson, J. (2005). Theoretical and practical reflections on sharing transcripts with participants. Qualitative Health Research, 15(8), 1114–1128. https://doi.org/10.1177/1049732305279065
Guba, E. G., & Lincoln, Y. S. (1994). Competing paradigms in qualitative research. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of Qualitative Research (2nd ed., pp. 105–137). Thousand Oaks, CA: Sage.
Guta, A., Nixon, S. A., & Wilson, M. G. (2013). Resisting the seduction of “ethics creep”: Using Foucault to surface complexity and contradiction in research ethics review. Social Science & Medicine, 98, 301–310. https://doi.org/10.1016/j.socscimed.2012.09.019
Haggerty, K. (2004). Ethics creep: Governing social science research in the name of ethics. Qualitative Sociology, 27, 391–414. https://doi.org/10.1023/B:QUAS.0000049239.15922.a3
Health Research Authority. (2012). Standard operating procedures for research ethics committees (2012, updated June 2013): Training requirements for researchers. Retrieved Jun 15, 2017, from http://www.hra.nhs.uk/wp-content/uploads/2013/09/Trainingrequirementsforresearchersv1.52012-07-27.pdf
Health Research Authority. (2014). Call for comments on the report: A review of adverse events in research, evidenced from breach notifications. Retrieved Jun 15, 2017, from http://www.hra.nhs.uk/wp-content/uploads/2014/05/Breach-comments-report_v-1.2.docx
Health Research Authority. (2016). Defining research. Retrieved Jun 15, 2017, from http://www.apcrc.nhs.uk/governance/is_it_research.htm
Hedgecoe, A. (2016). Reputational risk, academic freedom and research ethics review. Sociology, 50(3), 486–501. https://doi.org/10.1177/0038038515590756
HM Treasury and Department for Business Innovation and Skills. (2011). The plan for growth. Retrieved Jun 15, 2017, from https://www.gov.uk/government/publications/plan-for-growth--5
Hoeyer, K., Dahlager, L., & Lynöe, N. (2005). Conflicting notions of research ethics: The mutually challenging traditions of social scientists and medical researchers. Social Science & Medicine, 61(8), 1741–1749. https://doi.org/10.1016/j.socscimed.2005.03.026
van den Hoonaard, W. C., & Connolly, A. (2006). Anthropological research in light of research-ethics review: Canadian master’s theses, 1995–2004. Journal of Empirical Research on Human Research Ethics, 1(2), 59–69. https://doi.org/10.1525/jer.2006.1.2.59
Hubbard, G., Backett-Milburn, K., & Kemmer, D. (2001). Working with emotion: Issues for the researcher in fieldwork and teamwork. International Journal of Social Research Methodology, 4(2), 119–137. https://doi.org/10.1080/13645570116992
International Conference on Harmonization of Technical Requirements for Registration of Pharmaceuticals for Human Use. (1996). Good clinical practice: Consolidated guideline. Retrieved Jun 15, 2017, from http://www.ich.org/fileadmin/Public_Web_Site/ICH_Products/Guidelines/Efficacy/E6/E6_R1_Guideline.pdf
Kaiser, K. (2009). Protecting respondent confidentiality in qualitative research. Qualitative Health Research, 19(11), 1632–1641. https://doi.org/10.1177/1049732309350879
Librett, M., & Perrone, D. (2010). Apples and oranges: Ethnography and the IRB. Qualitative Research, 10(6), 729–747. https://doi.org/10.1177/1468794110380548
Miller, T., Birch, M., Mauthner, M., & Jessop, J. (Eds.). (2012). Ethics in qualitative research (2nd ed.). London: Sage.
Murphy, E., & Dingwall, R. (2007). Informed consent, anticipatory regulation and ethnographic practice. Social Science & Medicine, 65(11), 2223–2234. https://doi.org/10.1016/j.socscimed.2007.08.008
National Institute for Health Research. (n.d.). Good clinical practice (GCP) e-learning. Retrieved Jun 15, 2017, from https://learn.nihr.ac.uk/course/index.php?categoryid=5
Oakley, A. (2002). Social science and evidence-based everything: The case of education. Educational Review, 54(3), 277–286. https://doi.org/10.1080/001319102200001632
Pollock, K. (2012). Procedure versus process: Ethical paradigms and the conduct of qualitative research. BMC Medical Ethics, 13(1), 25. https://doi.org/10.1186/1472-6939-13-25
Richardson, S., & McMullan, M. (2007). Research ethics in the UK: What can sociology learn from health? Sociology, 41(6), 1115–1132. https://doi.org/10.1177/0038038507082318
Salman, R. A.-S., Beller, E., Kagan, J., Hemminki, E., Phillips, R. S., Savulescu, J., & Chalmers, I. (2014). Increasing value and reducing waste in biomedical research regulation and management. Lancet, 383(9912), 176–185. https://doi.org/10.1016/S0140-6736(13)62297-7
Schostak, J. (2005). Interviewing and representation in qualitative research. Maidenhead: Open University Press.
Shapiro, I. (2009). The flight from reality in the human sciences. Princeton, NJ: Princeton University Press.
Shaw, S. E., Petchey, R. P., Chapman, J., & Abbott, S. (2009). A double-edged sword? Health research and research governance in UK primary care. Social Science & Medicine, 68(5), 912–918. https://doi.org/10.1016/j.socscimed.2008.12.042
Sutton, L. (2009). “They’d only call you a scally if you are poor”: The impact of socio-economic status on children’s identities. Children’s Geographies, 7(3), 277–290. https://doi.org/10.1080/14733280903024449
Universities UK. (2012). The concordat to support research integrity. Retrieved Jun 15, 2017, from http://www.universitiesuk.ac.uk/policy-and-analysis/reports/Documents/2012/the-concordat-to-support-research-integrity.pdf
World Health Organization. (1975). Constitution of the World Health Organization: Principles. Retrieved Jun 15, 2017, from http://www.who.int/about/mission/en/
World Medical Association. (1964). Declaration of Helsinki: Ethical principles for medical research involving human subjects. Retrieved Jun 15, 2017, from http://www.wma.net/en/30publications/10policies/b3/
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We would like to thank our colleagues Dr Carolyn Tarrant and Dr Natalie Armstrong who provided useful comments on a draft of this chapter.
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Carter, P., Chew, S., Sutton, E. (2018). Ethics in Theory and Pseudo-Ethics in Practice. In: Macleod, C., Marx, J., Mnyaka, P., Treharne, G. (eds) The Palgrave Handbook of Ethics in Critical Research. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-319-74721-7_3
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