Accounts of consent: Orienting to self-other relations regarding motivations to participate in cancer bio-banking
Issue: Vol 11 No. 1 (2014)
Journal: Communication & Medicine
Subject Areas: Healthcare Communication Linguistics
Abstract:
The motivations of those who give consent to bio-banking research have received a great deal of attention in recent years. Previous work draws upon the notion of altruism, though the self and/or family have been proposed as significant factors. Drawing on 11 interviews with staff responsible for seeking consent to cancer bio-banking and 13 observations of staff asking people to consent in routine clinical encounters, we investigate how potential participants are oriented to, and constructed as oriented to, self and other related concerns (Author 2007). We adopt a rhetorical discourse analytic approach to the data and our perspective can be labelled as ‘ethics-in-interaction’.
Using analytic concepts such as repetition, extreme case formulation, typical case formulation and contrast structure, our observations are three-fold. Firstly, we demonstrate that orientation to ‘general others’ in altruistic accounts and to ‘self’ in minimising burden are foregrounded in constructions of motivation to participate in cancer bio-banking across the data corpus. Secondly, we identify complex relational accounts which involve the self as being more prominent in the consent encounter data where the staff have a nursing background whereas ‘general others’ feature more when the staff have a scientific background. Finally, we suggest implications based on the disparities between how participants are oriented in interviews and consent encounters which may have relevance for developing staff’s reflective practice.
Author: Hannah Shipman, Srikant Sarangi, Angus J. Clarke
References :
Albrecht, T. L., Blanchard, C., Ruckdeschel, J. C., Coovert, M. and Strongbow, R. (1999) Strategic physician communication and oncology clinical trials. Journal of Clinical Oncology 17 (10): 3324–3332.
Arribas-Ayllon, M., Sarangi, S. and Clarke, A. (2008) The micropolitics of responsibility vis-à-vis autonomy: Parental accounts of childhood genetic testing and (non)disclosure. Sociology of Health & Illness 30 (2): 255–271. http://dx.doi.org/10.1111/j.1467-9566.2007.01037.x
Arribas-Ayllon, M., Sarangi, S. and Clarke, A. (2009) Professional ambivalence: Accounts of ethical practice in childhood genetic testing. Journal of Genetic Counseling 18: 173–184. http://dx.doi.org/10.1007/s10897-008-9201-0
Arribas-Ayllon, M., Sarangi, S. and Clarke, A. (2011) Genetic Testing: Accounts of Autonomy, Responsibility and Blame. London: Routledge.
Barton, E. (2008) Further contributions from the ethical turn in composition/rhetoric: Analyzing ethics in interaction. College Composition and Communication 59 (4): 596–632.
Barton, E. (2011) Speaking for another: Ethics-in-interaction in medical encounters. In C. N. Candlin and S. Sarangi (eds) Handbook of Communication in Organisations and Professions, 215–234. Berlin: Mouton de Gruyter.
Barton, E. and Eggly, S. (2009) Ethical or unethical persuasion? The rhetoric of offers to participate in clinical trials. Written Communication 26 (3): 295–319. http://dx.doi.org/10.1177/0741088309336936
Beauchamp, T. and Childress J. (2009) Principles of Biomedical Ethics. Sixth edition. New York: Oxford University Press.
Busby, H. (2006) Biobanks, bioethics and concepts of donated blood in the UK. Sociology of Health and Illness 28 (6): 850–865. http://dx.doi.org/10.1111/j.1467-9566.2006.00546.x
Caulfield, T., Rachul, C. and Nelson, E. (2012) Biobanking, consent, and control: A survey of Albertans on key research ethics issues. Biopreservation and Biobanking 10 (5): 433–438. http://dx.doi.org/10.1089/bio.2012.0029
Research with stored biological samples: What do research participants want? Archives of Internal Medicine 165 (6): 652–655. http://dx.doi.org/10.1001/archinte.165.6.652
Dixon-Woods, M., Cavers, D., Jackson, C. J., Young, B., Forster, J., Heney, D. and Pritchard-Jones, K. (2008) Tissue samples as ‘gifts’ for research: A qualitative study of families and professionals. Medical Law International 9 (2): 131–150. http://dx.doi.org/10.1177/096853320800900203
Dixon-Woods, M. and Tarrant, C. (2009) Why do people cooperate with medical research? Findings from three studies. Social Science & Medicine 68 (12): 2215–2222. http://dx.doi.org/10.1016/j.socscimed.2009.03.034
Eborall, H. C., Stewart, M. C. W., Cunningham-Burley, S., Price, J. F. and Fowkes, G. R. (2011) Accrual and drop out in a primary prevention randomised controlled trial: Qualitative study. Trials 12: 7–14. http://dx.doi.org/10.1186/1745-6215-12-7
Elger, B. (2010) Ethical Issues of Human Genetic Databases: A Challenge to Classical Health Research Ethics? Aldershot: Ashgate.
Gefenas, E. (2012) Informed consent. In R. Chadwick (ed.) Encyclopedia of Applied Ethics, 721–730. London: Elsevier Academic Press.
Gottweis, H. and Petersen, A. (2008) Biobanks and governance: An introduction. In H. Gottweis and A. Petersen (eds) Biobanks: Governance in Comparative Perspective, 3–21. London: Routledge.
Haimes, E. and Whong-Barr, M. (2004) Levels and styles of participation in genetic databases: A case study of the North Cumbria genetics project. In R. Tutton and O. Corrigan (eds) Genetic Databases: Socio-Ethical Issues in the Collection and Use of DNA, 57–77. London: Routledge.
Hallowell, N., Cooke, S., Crawford, G., Lucassen, A., Parker, M. and Snowdon, C. (2010) An investigation of patients’ motivations for their participation in genetics-related research. Journal of Medical Ethics 36 (1): 37–45. http://dx.doi.org/10.1136/jme.2009.029264
Hoeyer, K. (2004) Ambiguous gifts: Public anxiety, informed consent and biobanks. In R. Tutton and O. Corrigan (eds) Genetic Databases: Socio-Ethical Issues in the Collection and Use of DNA, 97–116. London: Routledge.
Knoppers, B. M. and Abdul-Rahman, M. H. (2008) Biobanks in the literature. In B. Elger, N. Biller-Andorno, A. Mauron and A. M. Capron (eds) Ethical Issues in Governing Biobanks, 13–22. Aldershot: Ashgate Publishing.
Knoppers, B. M. and Chadwick, R. (2005) Human genetic research: Emerging trends in ethics. Nature Reviews Genetics 6 (1): 75–79. http://dx.doi.org/10.1038/nrg1505
Labov, W. (1972) Sociolinguistic Patterns. Philadelphia, PA: University of Pennsylvania Press.
Lawton, J. (2003) Lay experiences of health and illness: Past research and future agendas. Sociology of Health and Illness 25 (3): 23–40. http://dx.doi.org/10.1111/1467-9566.00338
Levinson, S. (1979) Activity types and language. Linguistics 17 (5–6): 365–399.
Master, Z., Nelson, E., Murdoch, B. and Caulfield, T. (2012) Biobanks, consent and claims of consensus. Nature Methods 9 (9): 885–888. http://dx.doi.org/10.1038/nmeth.2142
Melas, P. A., Sjöholm, L. K., Forsner, T., Edhborg, M., Juth, N., Forsell, Y. and Lavebratt, C. (2010) Examining the public refusal to consent to DNA biobanking: Empirical data from a Swedish population-based study. Journal of Medical Ethics 36 (2): 93–98. http://dx.doi.org/10.1136/jme.2009.032367
Murphy, J., Scott, J., Kaufman, D., Geller, G., LeRoy, L. and Hudson, K. (2009) Public perspectives on informed consent for biobanking. American Journal of Public Health 99 (12): 2128–2134. http://dx.doi.org/10.2105/AJPH.2008.157099
1999) ‘Patient counseling’ by pharmacists: Advice, information, or instruction? Sociological Quarterly 40 (4): 613–622. http://dx.doi.org/10.1111/j.1533-8525.1999.tb00570.x
2001) The interactional organization of pharmacist consultations in a hospital setting: a putative structure. Journal of Pragmatics 33 (12): 1927–1945. http://dx.doi.org/10.1016/S0378-2166(00)00079-5
Pilnick A. (2002) What ‘most people’ do: Exploring the ethical implications of genetic counselling. New Genetics and Society 21 (3): 339–350. http://dx.doi.org/10.1080/14636770216003
Pomerantz, A. (1986) Extreme case formulation: A way of legitimizing claims. Human Studies 9 (2–3): 219–229. http://dx.doi.org/10.1007/BF00148128
Ponder, M., Statham, H., Hallowell, N., Moon, J. A., Richards, M. and Raymond, F. L. (2008) Genetic research on rare familial disorders: Consent and the blurred boundaries between clinical service and research. Journal of Medical Ethics 34 (9): 690–694. http://dx.doi.org/10.1136/jme.2006.018564
Pullman, D., Etchegary, H., Gallagher, K., Hodgkinson, K., Keough, M., Morgan, D. and Street, C. (2012) Personal privacy, public benefits, and biobanks: A conjoint analysis of policy priorities and public perceptions. Genetics in Medicine 14 (2): 229–235. http://dx.doi.org/10.1038/gim.0b013e31822e578f
Roberts, C. and Sarangi, S. (2005) Theme-oriented discourse analysis of medical encounters. Medical Education 39: 632–640. http://dx.doi.org/10.1111/j.1365-2929.2005.02171.x
Roberts, F. (2002) Qualitative differences among cancer clinical trial explanations. Social Science and Medicine 55 (11): 1947–1955. http://dx.doi.org/10.1016/S0277-9536(01)00323-9
Rubin, H. J. and Rubin I. S. (2005) Qualitative Interviewing: The Art of Hearing Data. London: Sage.
Sarangi, S. (2007) Other-orientation in patient-centred healthcare communication: Unveiled ideology or discoursal ecology? In G. Garzone and S. Sarangi (eds) Discourse, Ideology and Ethics in Specialised Communication, 39–71. Bern: Peter Lang.
Sarangi, S. (2010a) Practising discourse analysis in healthcare settings. In I. Bourgeault, R. DeVries and R. Dingwall (eds) The SAGE Handbook of Qualitative Methods in Health Research, 397–416. London: Sage.
Sarangi, S. (2010b) Professional values in interaction: Non-directiveness, client-centredness and other-orientation in genetic counselling. In S. Pattison, B. Hannigan, R. Pill and H. Thomas (eds) Emerging Values in Healthcare: The Challenge for Professionals, 163–185. London: Jessica Kingsley.
Sarangi, S., Bennert, K., Howell, L., Clarke, A., Harper, P. and Gray, J. (2005) (Mis)alignments in counselling for Huntington’s disease predictive testing: Clients’ responses to reflective frames. Journal of Genetic Counseling 14: 29–42. http://dx.doi.org/10.1007/s10897-005-1498-3
Sarangi, S. and Clarke, A. (2002) Constructing an account by contrast in counselling for childhood genetic testing. Social Science & Medicine 54: 295–308. http://dx.doi.org/10.1016/S0277-9536(01)00029-6
Sarangi, S. and Duffin, D. (2010) The nuanced framing of clinical trial participation in the Huntington’s disease management clinic. Paper presented at the Eighth COMET Conference, June 28–30, Boston, USA.
Silverman, D. (1997) Discourses of Counselling: HIV Counselling as Social Interaction. London: Sage.
Smith, D. (1978) K is mentally ill: The anatomy of a factual account. Sociology 12 (1): 23–53. http://dx.doi.org/10.1177/003803857801200103
Titmuss, R. (1970) The Gift Relationship: From Human Blood to Social Policy. London: Allen & Unwin.
Wade, J., Donovan, J. L., Lane, J. A., Neal, D. E. and Hamdyc, F. C. (2009) It’s not just what you say, it’s also how you say it: Opening the ‘black box’ of informed consent appointments in randomised controlled trials. Social Science & Medicine 68 (11): 2018–2028. http://dx.doi.org/10.1016/j.socscimed.2009.02.023
Widdows, H. and Cordell, S. (2011) The ethics of biobanking: Key issues and controversies. Health Care Analysis 19 (3): 207–219. http://dx.doi.org/10.1007/s10728-011-0184-x
Williams, G. and Schroeder, D. (2004) Human genetic banking: Altruism, benefit and consent. New Genetics and Society 23 (1): 89–103. http://dx.doi.org/10.1080/1463677042000189598