This paper examines the issue of research ethics, specifically research ethics raised by researching various aspects of minority ethnic communities. It considers the usual aspects of research ethics, namely, informed consent and confidentiality procedures but additionally focuses upon procedures to promote dialogue between researchers and 'the researched', minority ethnic communities. It identifies a fundamental tension in respect of the relationship between minority ethnic community organisations and researchers and the significance of this relationship in ensuring that research with, in and of minority ethnic communities is ethical. This tension runs throughout the paper and involves questions about the skills and knowledge of researchers versus the needs of minority ethnic communities. The demands of the Australian Aboriginal community apropos of ethical research procedures amply illustrates this relationship. To some extent the paper raises more questions than it answers: on the one hand, this is a deliberate approach - the debate on research ethics vis-ý-vis the researching minority ethnic communities needs to address some thorny issues, and on the other hand, given that these are thorny issues, no easy answers can be offered. The aim of the paper is to stimulate debate with a view to the resolution of some of the issues identified here.
The issue of research ethics is often included in research reports as an afterthought. Essentially, research ethics refer to the responsibility of the researcher to ensure that the participants (the subjects) of the research are not harmed by the research. Hence, it is the responsibility of the researcher to ensure that she or he has fully explicated the possible intended and unintended consequences of the research being carried out. However, research ethics encompass a broader field than this; research ethics are at the core of methodological issues. Kellehear regards this relationship (between ethics and methodology) as a 'marriage', viewing the problems of one as intimately connected to the other:
'When researchers select a problem for study, they willingly or unwittingly, chose a set of methodological and ethical problems which will accompany and dog their efforts every step of the way.' 1
Ethical concerns have implications at all stages of the research process, from the identification of a research questions to dissemination of findings.
In much of the (small but ever-increasing) published research on minority ethnic communities within Ireland, it is striking to note the extent to which ethics are not raised as a distinct issue, as an issue which has a huge bearing on the methodological choices made and methods chosen to collect data. Rigal's paper on Traveller fertility control is an examplar of this; she merely states:
'For the purposes of confidentiality, the informants' names have been altered.' 2
My comments should not be taken as suggesting that researchers have been wilfully unethical, rather they direct attention to the lack of appreciation of the centrality of ethics in the empirical research agenda. I suggest that it is not enough simply to briefly refer to how 'all names have been changed'; rather, there is an urgent need within Irish empirical social research for explicit attention to be afforded to the question of ethics.
The contention of this paper is that the ethical issues raised by research of minority ethnic communities are not peculiar to these groups. They may be raised in particular ways but the professional standards relating to ethical practice hold for all research.
The premise underlying this discussion of research ethics and their centrality to the sociological endeavour is that research findings matter - policy makers and those designing and delivering services use research findings (albeit sometimes selectively) in their work. It is also important to remember that so-called research 'subjects' are real people, experiencing all aspects of the human condition - researching their lives means that the researcher is intervening, to a greater or lesser extent, and this fact alone has implications for ethics.
Minority ethnic communities in Ireland are, for a variety of reasons, increasingly the subject of research undertaken by students in universities, professional researchers and researchers commissioned by Government agencies. For the purposes of this paper, the ethical issues raised by research on the Traveller community, an indigenous minority community, are used to provide a broad framework of necessary ethical procedures which hold for other minority ethnic communities, such as programme refugees (e.g. the Bosnian community) asylum seekers and migrants. The points made are from a sociological perspective (and draw upon my own research experience and ethical dilemmas) and other disciplines, such as psychology and medicine, have specific ethical issues which are not addressed in this paper.
In attempting to delineate the central issues in relation to ethical research practice, I want to begin by noting (and this is not a novel point) that much of the empirical studies in sociology have been on the so-called 'under-dog', rather than on the 'top-dogs'. An example would be the multitude of research on persons convicted of property crimes while the study of corporate or 'white-collar' crime remains largely undocumented. This point has a particular relevance in respect of research ethics: those studied are often in relatively powerless positions, lacking cultural and/or institutional power. In this respect, the question of ethics assumes salience - the researcher is generally not a member of the community, she or he is generally qualified, with specialised technical language and she or he has the final say about the content of a research report and the dissemination of research findings (largely through the medium of print).
In contrast, members of minority ethnic communities, such as Travellers, do not, by and large, have formal education. They, therefore, do not have access to the technical vocabulary of research; in consequence, they have little power vis-a-vis the researcher in respect of how the research is carried out nor of how it is to be reported. 3 These points locate the issue of ethics within a wider context of empowering minority ethnic communities. This understanding of ethics is at the heart of feminist and participatory research methodologies. They point to issues of asymmetrical power relations, of poverty and exclusion. Empirical research, involving members of these communities, should have due regard as to how such research impacts on the situation of the researched communities. The question, 'What are the ethical implications of this research?' goes beyond the traditional understanding of research ethics to a broader sensitivity to the ways in which research can affect the researched communities. 4
The main elements of a check list for ethical research practice are, undoubtedly, informed consent and the dictum 'do no harm'. These are discussed below, and I attempt to move the discussion of 'do no harm' beyond traditional understandings of 'harm' (or trauma) as something which the researcher inflicts, to an understanding of some research encounters between the researcher and the researched as in themselves traumatic.
Research involving people should only be carried out with their consent. In practical terms, this means that the researcher informed potential research participants about the aims of the study. This should be done in a way which makes the research meaningful to the respondent. Researchers must also ensure that potential participants are aware that, should they participate, their participation is entirely voluntary and can be terminated at any time, without prejudice. Recognition of the voluntary nature of participation is at the heart of ensuring informed consent.
What constitutes 'harm'? Traditionally, it is understood as ensuring that no harm (injury, trauma) is inflicted on research participants as a consequence of their participation in the research. Ethics committees and other gatekeepers are especially concerned to ensure that this is not an outcome of research proposals they examine. In my experience of seeking various ethics committees' approval to access research participants, key issues raised included the need for sensitivity, the need to ensure that participation would be voluntary and the need to ensure that confidentiality would be maintained. Kellehear recounts a similar experience:
'I believed that the desire to avoid harm was enough to minimise it. Looking back, however, I realise that neither the ethics committee nor I saw that the research relationship I was proposing, and that they were approving, was in itself a traumatising situation.' 5
In his work with terminally ill (cancer) patients, he was constantly party to the pain and fears of the research participants as expressed over the course of the research interviews. Often respondents expressed such feelings through tears. These responses were the result of having to speak about how they felt about their terminally ill state. As Kellehear asks:
'Were these traumas, if not actually caused then at least stirred by me, ones that could be viewed as harmful?' 6
Kellehear's experiences points to the need for the researcher to recognise that the nature of the research questions may produce a response from participants which is 'traumatic'. How is the researcher to deal with that? Feminist research 7 and participatory research practices have argued against the traditional 'hit and run' approach adopted by mainstream researchers (i.e. where the researcher carries out fieldwork, gathers the requisite data and runs, never again to be seen by research participants). Closer to the actual stage of carrying out fieldwork, the researcher needs to be aware that the research itself, involving the researcher asking questions and probing appropriately, may result in distress on the part of the research participant. These points clearly relate to sensitive topics but one approach which I have adopted has been to ensure that extra-research support was provided. This meant that whilst the research interview itself may 'stir up' a potentially harmful reaction, support is available for the participant after the researcher has 'run'. Of course, the provision of such support is dependent on available resources (including services).
Kellehear comments that those who control access to research participants are justly concerned about 'harm', yet he contends that while caution needs to be exercised by such persons (be they Ethics Committees, or indeed, community organisations), he concludes that harm must be weighted against good:
'Without ever questioning the dying about their social experience as they see it and as they interpret it, we are confined to speculation and the opinion of caretakers. Without information about what may or may not be typical, individual dying persons may feel that their own needs or experiences are deviant, eccentric or neurotic. Without systematic talks with the dying, we may not reliably determine what are their problems and what are our problems. Without their story, we may not be able to separate out the two, or see how one might affect the other. Without this sort of work, the dying have no idea how others like them die, and they want to know, and when we become them, we may want to know.' 8
Some research will, therefore, be intrinsically traumatic, but it is not a trauma engendered by the research and, paradoxically, it is a trauma which has positive aspects, namely, the desire of individuals to tell their story. Most researchers can recount tales of respondents thanking them for the opportunity to tell their story, no matter how difficult the telling has been. The example used to illustrate this aspect of ethics may be considered irrelevant to minority communities within Ireland; however, it points to how difficult, sensitive issues raise ethical dilemmas.
Most empirical research involving individuals seeks to ensure that in the presentation of research findings, the individuals who have taken part in the research are not identifiable. To this end, researchers guarantee confidentiality. As the BSA Code of Practice notes, where confidentiality has been assured, all efforts must be taken to ensure that it is upheld. This means, for example, ensuring that there are no identifiable markers on completed questionnaires or on interview transcripts. It generally involves using pseudonyms and fictitious place names.
One ethical dilemma rarely, if ever, referred to in research textbooks but of crucial relevance to the maintenance of confidentiality, relates to the very presence of a researcher and to the information conveyed to others by his or her presence. In short, interaction with a researcher may have identity implications. A (hypothetical) instance, and somewhat awkwardly stated, would be community knowledge of a researcher who researched women's experience of male violence.
If a female community member was seen with this researcher, onlookers might reach conclusions that the female was experiencing male violence. Such situations have clear relevance to upholding confidentiality of research respondents.
Concerning the Traveller community in Ireland, it has been noted that special efforts need to be undertaken to preserve confidentiality. The community is relatively compact and specific features of an individual's life, if reported, may be clear clues to others as to his or her identity.
Ensuring confidentiality, therefore, means that the researcher is aware of the nature of the community studied and possible unintended consequences which militate against the attainment of confidentiality.
The ethical dilemma is: what are the social and political implications for one's respondents when publishing one's findings? What happens when elements of the research could be used as, for example, the basis of an argument to discontinue funding? What happens if research reports cultural practices which are deemed by the majority community to be undesirable?
Researchers should return to community organisations with draft reports, prior to their publication, in order to ensure that she/he has not misrepresented activities. This is not to to suggest that research should be, in Jack Douglas' terms, 'laundered', 9 but it is one way of attempting to ensure that the implications of publishing materials are fully thought through. Again, it needs to be noted that, ultimately, it is the researcher who has (skills and) responsibility to determine the content of publications. Here is a clear example of the tension referred to at the start of this paper. To what extent does the researcher 'control' the research, and what is the role of the researched community?
Ensuring ethical research practice
Kellehear argues that only so much basic work can be achieved by theoretical discussion of methods and ethics. The most relevant and practical approaches must come from actual work-in-progress. He contends that:
'Researchers who use ethical codes as checklists run the risk of overlooking areas not covered by such "lists".' 10
that is, that each research project raises ethical concerns in a specific way. Kellehear goes on to comment that:
'The most sensitive methods have always been those adapted and shaped to suit the particular requirements of the selected research problems. This should be the case for ethics too. The most responsible and relevant ethics are, or will be, those which arise from the particular social and moral complexities of the research, the type of participants, that is their particular characteristics, and their social and political context.' 11
He concludes by noting that to argue for ethics is not to promote a style of moral or ethical relativism.
There is a greater need for collaboration between researchers in the academy and those removed from 'the coalface' (i.e. direct contact with the community) and the organisations representing minority ethnic communities. Within such organisations, the knowledge of issues affecting the community, cultural practices and so on is in abundance. However, it is important that such organisations themselves recognise their limits in respect of research skills; that they do not act as paternalistic gate-keepers, assuming that 'they know best' for the members of their represented communities. However, that said, the National Workshop on Ethics of Research in Aboriginal Health 12 identifies community structures as the most appropriate mechanisms for determining and monitoring ethical standards. In Ireland, such community structures include representative organisations.
As stated throughout this discussion, there are a number of dimensions which need to be addressed in ensuring that research conforms to ethical standards. The Australian Aboriginal community have been proactive in regard to their demands of researchers in terms of ethics. The following reproduces the salient points made by the National Workshop on ethics of research in Aboriginal health (appended to the National Aboriginal Health Strategy). 13 The comments are of direct relevant to research into the lives and behaviours of other minority indigenous communities. The National Workshop contends that research is
The pivotal issue identified by the National Workshop is the requirement for research to be relevant to community needs, rather than as a 'vehicle for individual aggrandisement'. 14 Here, 'ethics' is explicitly broadly conceived.
The National Workshop recommends the following procedures in order to promote ethical research:
Other issues with ethical implications are identified and procedure proposed:
Exploitation of Community Resources: Researchers must address the question of proper utilisation of finite community resources and must, in seeking the co-operation of indigenous communities, provide reimbursement of any cost incurred.
Ownership and Publication of Materials: Research materials and data shall remain the property of the community. The community retains the right to censor research materials of a sensitive nature. Researchers must fully acknowledge the assistance and participation of communities. Researchers must ensure that individuals cannot be identified in their presentation of research findings.
Communication and Consent: The National Workshop regarded this as fundamental to the development of ethical standards. It noted that researchers are often ignorant of culturally specific practices. Crucially, the National Workshop proposed that:
Communities must be provided with all the relevant information and explanations on the intent, process and methodology, evaluation and potential use of any research proposal. This information must be provided at the level of comprehension of the community and must utilise appropriate community educational process and tools. (1989)
Social and Gender Issues: These were identified as the most difficult ethical issues. Researchers must address the potential for social and cultural conflict; researchers must not enforce their community's moral, social or cultural assumptions about appropriateness in dealing with minority ethnic communities.
The benchmarks for identifying the extent to which researchers meet community identified ethical standards include the following:
Researchers should:
The above recommendations are relevant, to greater and lesser extents, depending on the nature and scope of the research being undertaken. The socio-economic situation and culture of Aboriginal communities is quite specific and recommendations by this community may not translate to the Irish situation easily. However, I consider that they embody a spirit rather than a prescription of what must be followed. It is imperative to acknowledge that it is the professional researcher who holders the requisite research skills and theoretical knowledge. That noted, it is the minority ethnic community, the 'subject' of the research, who holds the requisite knowledge about cultural practices and views as to appropriate and inappropriate research.
The foregoing discussion has attempted to outline the key features of ethical research practice. It has been especially concerned to direct attention to the specific ethics questions which arise in researching minority ethnic communities. Drawing extensively on the community initiated proposals for ethical research in Aboriginal health, the discussion has outlined some of the procedures proposed. I have not attempted to suggest that minority ethnic community organisations adopt all of these recommendations. However, they may use such proposals as a basis for their demands on researchers. Finally, to reiterate points made at the outset, it should be obvious that ethics inform all aspects of the research endeavour, from inception to completion - research ethics are not a caveat to the research design. Further ensuring ethical research practice in research on minority ethnic communities is not something which requires a distinct style of research - all professional sociological research conforms to such standards, although, as noted, the adherence to such standards often remains implicit rather than explicit. I have suggested that research ethics need to be explicitly addressed in research practice.
The initiatives of minority ethnic communities in other countries provide a useful resource from which to draw in identifying elements of a research ethics checklist. The initiative considered in this paper points to how a more collaborative research relationship can be forged between the researcher (including professional associations, universities and commissioning agencies) and the researched, minority ethnic communities, to the benefit of all.
Thanks to Ann Marie McGuaran, TCD, and to Linda Curran, Bosnian Community Development Project, both of whom took time to read a draft of this paper.
Bibliography
Douglas, J., (ed.), Understanding Everyday Life: Towards the Reconstruction of Sociological Knowledge; Routledge & Kegan Paul; London; 1971.
Kellehear, A., 'Ethics and Social Research' in Doing Fieldwork: Eight Personal Accounts of Personal Research, J. Perry (ed.); Deakin University Press; Victoria; 1989.
Kelly, L., Surviving Sexual Violence; Polity Press in association with Basil Blackwell Ltd.; Cambridge; 1988.
National Aboriginal Health Strategy Working Party, Report of the National Workshop on Ethics of Research in Aboriginal Health, Appendix XII in A National Aboriginal Health Strategy; ACT.
Rigal, J., 'The Emergence of Fertility Control among Irish Travellers' in Irish Journal of Sociology; Vol. 3; 1993.
1 A. Kellehear, 'Ethics and Social Research' in Doing Fieldwork: Eight Personal Accounts of Personal Research, J. Perry (ed.); Deakin University Press; Victoria; 1989. P.71.Return to Main Text
2 J. Rigal, 'The Emergence of Fertility Control among Irish Travellers' in Irish Journal of Sociology; Vol. 3; 1993. P. 96.Return to Main Text
3 It has however been suggested that prospective research participants are in a powerful position: they can simply refuse to participate.Return to Main Text
4 The question of whether the impact of research on the researched community necessarily raises ethical issues is of relevance here &endash; in traditional understandings of the parameters of what constitutes 'ethics', the response is perhaps equivocal: it can depend. However, in terms of the understanding of ethics I am advancing, it is important that all research proposals be scrutinised in terms of their ethical implications.Return to Main Text
5 A. Kellehear, op. cit. PP. 63-64.Return to Main Text
6 Ibid. P. 64.Return to Main Text
7 See for example L. Kelly, Surviving Sexual Violence; Polity Press in association with Basil Blackwell Ltd; Cambridge; 1988.Return to Main Text
8 A. Kellehear, op. cit. P. 65.Return to Main Text
9 J. Douglas, Understanding Everyday Life: Towards the Reconstruction of Sociological Knowledge; Routledge & Kegan Paul; London; 1971.Return to Main Text
10 A. Kellehear, op. cit. P. 68.Return to Main Text
11 Ibid.Return to Main Text
12 Report in A National Aboriginal Health Strategy; National Workshop on Ethics of Research in Aboriginal Health; ACT; 1989.Return to Main Text
13 Ibid.Return to Main Text
14 Ibid.Return to Main Text
15 As was pointed out to me, this has implications for the actual process of carrying out research - who is going to remunerate the researcher for this 'pre' research work?Return to Main Text