Truman (2003) 'Ethics and the Ruling Relations of
Sociological Research Online, vol. 8, no. 1, <http://www.socresonline.org.uk/8/1/truman.html>
To cite articles published in Sociological Research Online, please reference the above information and include paragraph numbers if necessary
Received: 3/9/2002 Accepted: 20/1/2003 Published: 28/02/2003
My first meeting with the management committee of the gym brought the funding process into sharp relief, when I explained about the research that was going to take place. After my introduction about what the research would involve, how the gym might benefit from the research, and how users could contribute to the research process, the first question the users on the management committee asked was 'How much is the research costing?'. I knew that the research budget was almost as much as the running costs for the gym over several months, and it was with a degree of embarrassment that I explained to them that research is very expensive. Large research grants may carry prestige within universities, but I did not dare to reveal how much the research cost as I sat in a management meeting in an upstairs room of the Salvation Army premises in one of the most economically deprived towns in Britain. At this point, one user said that he felt that the gym didn't need a research project as much as it needed a stair lift to provide disabled access, so couldn't the money be better spent there? Fortunately, the manager of the gym, who was aware of the politics of why the research needed to take place, came to my rescue and smoothed over the cracks before they became a chasm. The management committee duly gave approval for the research to go ahead.
'Proper governance of research is ... essential to ensure that the public can have confidence in, and benefit from, quality research in health and social care. The public has a right to expect high scientific, ethical and financial standards, transparent decision making processes, clear allocation of responsibilities and robust monitoring arrangements' (DoH 2001).
'receives many applications and has developed a form of application which enables it to deal expeditiously with new applications. It is not, therefore, prepared to receive applications on any other form than that which is made available to potential applicants' (South Cumbria Research Ethics Committee 1997:1).
In our research study, an array of outside experts had approved a research protocol which outlined that eight focus groups would take place over a twelve-month period; each group would involve between eight and ten users. The project's full-time research assistant spent considerable time at the gym, making links with service users with a view to recruiting participants to the first focus group. Although payment of expenses was offered to participants, recruitment proved difficult. Many users were unwilling to take part in a focus group, and half of those who agreed to take part failed to attend on the day. The research assistant for the project felt that she had developed a good relationship with users, so in the end, we began to ask direct questions about what prevented them from joining focus groups. Various factors emerged, including: variation in mental health symptoms which could preclude attendance; users felt they had little to contribute; and anxiety concerning group situations. In some cases, no specific reasons were given by individuals who simply did not want to join a focus group. For example, a number of users, whilst happy to talk to the research assistant, clearly had no interest in the research study and simply 'drifted off' at the point that focus groups were mentioned.
My name is Rebecca and I have been nominated by the evaluation group to tell you what we are about. The evaluation group consists of a staff member, two researchers and four gym users. As part of Lancaster University's research, the evaluation group was set up to compile information on the gym by way of a questionnaire. For the evaluation group this posed quite a challenge. We had to organise a set of questions that would:
. Personally, I found the process of setting up the questionnaire a challenge with many rewards. What originally seemed a very daunting task soon became interesting, fun and it gave me the chance of doing something worthwhile. Another reward was the chance to work with a fantastic group of people! Cheers Everyone!
- Give answers that could be put in a database.
- Ask questions that would highlight both positive and negative aspects of the Gym.
- Show areas in which the gym could make improvements.
- Give gym users a voice.
- But most importantly, be COMPLETELY ANONYMOUS
We have now finished the questionnaire and are hoping to send it out to users. We would appreciate your help and co-operation in completing these questionnaires. Don't worry these are not going to be personal questionnaires and they are anonymous. But, when the answers are compiled on database, it should highlight areas in which the gym is working, areas that need improvements, and also find out what YOU the users want from YOUR gym. Please don't think, oh no, not another form, as it is the results from these questionnaires that will give you the user what you want. So be warned a questionnaire will be circulating in your area soon. I wish to thank you all in advance for filling out the questionnaires and also everyone that helped make this happen.
(Extract reproduced from a booklet which provides a short summary of the research)
'well I didn't want to do it [interview] at first, and then I saw [another service user] giving you information, and I thought "oh well, go on, do it yourself."'
The user evaluation group ( referred to in the extract from Rebecca) undertook to do an on-going user-led evaluation of the gym. This involved users designing, administering and analysing an evaluation tool which took the form of a short questionnaire. The evaluation group usually worked in pairs to administer the questionnaire. On one occasion, they approached another user of the gym and asked him if he would be willing to complete a questionnaire. The user said that he was experiencing a psychotic episode at that moment (he said he was hearing voices). The researchers said they could easily ask the questions at some other time and thought it best to leave him alone. However, the user said that he was trying to manage this psychotic episode by being active and that he would like them to help him complete the questionnaire. The researchers sat with him and helped him to do this.
'Professional codes of ethics are the justified norms of the profession. However, the application of those norms is interpretive, and depends on the local and particular features of each situation. ... the interpretive aspect of application is best carried out in a dialogical process ... a partner in dialogue helps us to recognise our unconscious investments, our blind spots, unrecognised feelings, or unchallenged attitudes ... the centrality of ethics ... depends upon the possibility of unconstrained dialogue' (Rossiter et al 2000:95).
BATCHELOR, J. and BRIGGS, C. (1994) Subject, Project or Self - Thoughts in Ethical Dilemmas for Social and Medical Researchers Social Science and Medicine 39 (7) 949-954.
BAXTER, L., THORNE, L. and MITCHELL, A. (2001) Lay Involvement in Health Research Exeter: Washington Singer Press.
BRITISH SOCIOLOGICAL ASSOCIATION (2002) 'Statement of Ethical Practice' Durham: British Sociological Society <http://www.britsoc.org.uk/about/et hic.htm>
BROWN, H. and THOMPSON, D (1997) The ethics of research with men who have learning disabilities and abusive sexual behaviour: a minefield in a vacuum. Disability and Society 12 (5), 695-707.
BROWNE, A. 'Hospital body parts scandal grows' The Observer newspaper December 5th.
BULMER, M. (1982) Social Research Ethics London: Macmillan.
CAMPBELL, M. and MANICOM, A. (1995) Knowledge, Experience and RulingRelations: Studies in the Social Organization of Knowledge Toronto: University of Toronto Press.
COOMBER, R. (2002) 'Signing your life away?: Why Research Ethics Committees (REC) shouldn't always require written confirmation that participants in research have been informed of the aims of a study and their rights - the case of criminal populations. (Commentary). Sociological Research Online Vol. 7 no. 1. <http://www.socresonline.org.uk/7/1/coomber.html>.
DEPARTMENT OF HEALTH (2001) Research Governance Framework for Health and Social Care London: HMSO.
DEVAULT M. (1999) Liberating Method: Feminism and Social Research Philadelphia: Temple University Press.
FINCH, J. (1984) '"It's Great to Have Someone to Talk to": The Ethics and Politics of Interviewing Women.' In C. Bell and H. Roberts (eds.) Social Researching: Politics, Problems, Practice. London: Routledge and Kegan Paul.
GALLAGHER, B., CREIGHTON, S. and GIBBONS, J. (1995) Ethical dilemmas in social research - no easy solutions British Journal of Social Work 25 (3) 295-311.
GAULD, R. and MACMILLAN, J. (1999) Ethics Committees and Qualitative health research in New Zealand New Zealand Medical Journal 112 (1089) 195-197.
GELLING, L. (1999) 'Role of the Research Ethics Committee' Nurse Education Today 19, 564-569.
GUARDIAN (2001) 'Special Report: Alder Hey Organs Scandal' February 5th.
HOMAN, R. (1991) The Ethics of Social Research London: Longman.
HOMAN, R. (1992) The Ethics of Open Methods British Journal of Sociology 43 (3) 321-332.
HUMPHRIES, B. (2000) 'Unsettling Ethics in Social Research' in Blasius, J., Hox, J., de Leeuw and Schmidt, P. (eds.) Social Science Methodology in the New Millennium Cologne: TT-Publikaties (CD ROM).
HUNT, G. (1992) 'Local Research Ethics Committees and nursing: a critical look' British Journal of Nursing 1 (7), 349-351.
KENT, G. (1997) 'The views of members of Local Research Ethics Committees, researchers and members of the public towards roles and functions of LRECs' Journal of Medical Ethics 23, 186-190.
LYNOE, N., SANDLUND, M., JACOBSSON, L. (1999) Research Ethics Committees: a comparative study of assessment of ethical dilemmas. Scandanavian Journal of Psychiatry 2, 152-159.
OAKLEY , A. (1981) "Interviewing Women: A Contradiction in Terms" in H. Roberts (ed.) Doing Feminist Research London: Routledge and Kegan Paul.
POPAY, J. ROGERS, A. WILLIAMS, G. (1998) Rationale and standards for the systematic review of qualitative literature in health services research. Qualitative Health Research 8, 341-351.
RAINE, P. TRUMAN, C and SOUTHERST, A. (2002) 'The Development of A Community Gym for People with Mental Health Problems: Influences on Accessibility' Journal of Mental Health 11, 1 43-53.
RAMCHARAN, P. and CUTLIFFE, J. (2001) Judging the Ethics of Qualitative Research: considering the 'ethics as process' model Health and Social Care in the Community 9 (6), 358-366.
RIBBENS, J. and EDWARDS, R. (eds.) (1998) Feminist Dilemmas in Qualitative Research: Public Knowledge and Private Lives London: Sage.
ROBINSON, I. (1991) 'Confidentiality for Whom?' Social Science and Medicine 32 (3) 279-286.
ROSSITER, A., PRILLELTENSKY, I., and WALSH- BOWERS, R. (2000) 'A postmodern perspective on professional ethics' in B. Fawcett, B. Featherstone, J. Fook and A. Rossiter (eds.) Practice and Research in Social Work: postmodern feminist perspectives London and New York: Routledge.
ROYAL COLLEGE OF PHYSICIANS (1990) Guidelines on the Practice of Ethics Committees in Medical Research Involving Human Subjects Royal College of Physicians: London.
SMITH, D. (1987) The Everyday World as Problematic: A Feminist Sociology Boston: Northeastern University Press.
SMITH, D (1990a) The Conceptual Practices of Power: A Feminist Sociology of Knowledge New York: Routledge.
SMITH, D. (1990b) Texts, Facts and Femininity: Exploring the Relations of Ruling New York: Routledge.
SMITH, T. (1999) Ethics in Medical Research: A Handbook of Good Practice Cambridge: Cambridge University Press.
SONG, M. and PARKER, D. (1995) Commonality, difference and the dynamics of disclosure in in-depth interviewing Sociology 29 (2) 241-256.
SOUTH CUMBRIA RESEARCH ETHICS COMMITTEE (1997) Information/Guidelines for Application Kendal: Morecambe Bay Health Authority.
STACEY, J. (1988) Can there be a feminist ethnography? Women's Studies International Forum 11 (1), 21-27.
STALKER, K. (1998) Some ethical and methodological issues in research with people with learning disabilities Disability and Society 13 (1), 5-19.
TRUMAN, C. and RAINE P. (2001a) 'Involving Users in Evaluation: the social relations of user involvement in health research' (with P. Raine) Critical Public Health, Vol. 11 No 3: September pp 215-232.
TRUMAN, C. and RAINE, P. (2001b) 'Running Rings Round Life' Mental Health Today October pp 22-5.
TRUMAN, C. and RAINE P. (2000) User Participation, Mental Health and Exercise: Learning From the Experiences of Barrow Community Gym Final Report, Lancaster University. / NHS Executive NorthWest.
TRUMAN, C and RAINE, P. (2002) 'Experience and Meaning of User Involvement - Some Explorations From A Community Mental Health Project' Health and Social Care in the Community 10 (3), 136-143.
TRUMAN, C and HUMPHRIES, B (1994) 'Rethinking social research: Research in an Unequal World' in B. Humphries and C. Truman (eds.) Re-thinking Social Research Aldershot: Avebury pp 1 - 20.
USHER, K. and ARTHUR, D. (1998) Process and Consent; a model for enhancing informed consent in mental health research. Journal of Advanced Nursing 27, 692-697.
VAN DEN HOONAARD, W. (2001) 'Is Ethics Review a Moral Panic?' Canadian Review of Sociology and Anthropology 38, 1. 19 - 35.