Research Ethics and the Moral Enterprise of Ethnography: Conjunctions and Contradictions

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This article was downloaded by: [UQ Library]On: 21 November 2014, At: 21:04Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954 Registeredoffice: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UKEthics and Social WelfarePublication details, including instructions for authors andsubscription information:http://www.tandfonline.com/loi/resw20Research Ethics and the MoralEnterprise of Ethnography:Conjunctions and ContradictionsSara Ashencaen CrabtreePublished online: 17 Jul 2012.To cite this article: Sara Ashencaen Crabtree (2013) Research Ethics and the Moral Enterpriseof Ethnography: Conjunctions and Contradictions, Ethics and Social Welfare, 7:4, 359-378, DOI:10.1080/17496535.2012.703683To link to this article: http://dx.doi.org/10.1080/17496535.2012.703683PLEASE SCROLL DOWN FOR ARTICLETaylor & Francis makes every effort to ensure the accuracy of all the information (theContent) contained in the publications on our platform. 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Terms &Conditions of access and use can be found at http://www.tandfonline.com/page/terms-and-conditionshttp://www.tandfonline.com/loi/resw20http://www.tandfonline.com/action/showCitFormats?doi=10.1080/17496535.2012.703683http://dx.doi.org/10.1080/17496535.2012.703683http://www.tandfonline.com/page/terms-and-conditionshttp://www.tandfonline.com/page/terms-and-conditionsResearch Ethics and the Moral Enterpriseof Ethnography: Conjunctions andContradictionsSara Ashencaen CrabtreeThis paper explores the perceptions and experiences of four doctoral research-ers to examine how research ethics committee (REC) processes have shaped andinfluenced specific health-based ethnographic studies. This paper considers howa universal tightening of ethical REC scrutiny at university level, as well as thosegoverning the health and social care sector in the United Kingdom, impacts uponsocial research involving the inclusion of participants from certain groups.Increased restrictions in ethics scrutiny is justified as protecting vulnerablepeople from intrusive research and is embedded in legislation, specifically theUK Mental Capacity Act 2005. The general international trend towards greaterethical scrutiny is heralded as an uncontested social good, yet this unquestionedassumption is tested in relation to qualitative social research methodologiesthat seek to explore the experiences of vulnerable individuals. It isconsequently argued that ethics review restrictions are in danger of disenfran-chising sectors of the community, excluding them from engaging in socialresearch activities that would serve to highlight their experiential and livedconditions. The enhanced bureaucratic control of the doctoral process inconjunction with the REC is also discussed as inhibiting proposed studies.Keywords Ethnography; Ethics Review; Doctoral; Vulnerable; HealthIntroductionThis paper reviews ethical considerations in undertaking ethnographic researchwith service user/patient populations in the context of increasing ethical scrutinyin research ethics committee (REC) processes at university level. These arepowerfully influenced by those governing health and social research in the UnitedKingdom, and which taken in unison create formidable barriers to such research.Accordingly, the impact of these tighter control mechanisms is explored in termsof future ethnographic research, specifically in relation to doctoral research in# 2013 Taylor & FrancisDr Sara Ashencaen Crabtree is Deputy Director of the Centre for Social Work & Social Policy and Headof Sociology at the School of Health & Social Care, Bournemouth University, UK. Correspondence to:Sara Ashencaen Crabtree, School of Health & Social Care, Bournemouth University, 3rd Floor, RoyalLondon House, Christchurch Road, Bournemouth Dorset BH1 3LT, UK Email: scrabtree@bournemouth.ac.ukEthics and Social Welfare, 2013Vol. 7, No. 4, 359378, http://dx.doi.org/10.1080/17496535.2012.703683Downloaded by [UQ Library] at 21:04 21 November 2014mailto:scrabtree@bournemouth.ac.ukmailto:scrabtree@bournemouth.ac.ukhttp://dx.doi.org/10.1080/17496535.2012.703683the United Kingdom, but with wider implications for qualitative research in thesocial science academy.Despite challenges to the research odyssey of the solo researcher in theirsingular development of a narrative construction of a phenomenon (Lee 2008),for most social science postgraduates the traditional solitary quest for immersioninto a phenomenon to achieve deep insights, characteristic of ethnography, fitsthe demands of doctoral research well. Furthermore, the diverse but esotericculture of health care has been a compelling subject for a number ofethnographers (Estroff 1985; Savage 2000; Holloway & Todres 2010).A crucial aspect of ethnography carrying substantial relevance to the debateand discourse on research ethics is ethnographys ability to uncover and amplifythe voices of individuals, which may otherwise remain muted and unheard in thewider public space. Consequently, ethnography can reveal the largely unseen orun-noted, particularly in relation to marginalised or vulnerable people. Ethno-graphy therefore may be viewed as carrying an integral moral enterprise,resonating with the Chicago Schools focus on constructing ethnographies of thesocially obscure and disenfranchised in the non-exotic but distinctive and little-known marginal terrains of a nation (Deegan 2001). The use of the word moraltherefore carries specific and deliberate overtones for the discussions rehearsedin this paper, where, in reference to Kleinman (1995) and Gotlib Conn (2008),morals underpin the personal commitment to principled enactments andinteractions in the social world, while ethics tends to constitute a codifiedcorpus of stated principles, usually professionally identified.This paper draws upon a comparative analysis of the accounts of fouracademics at British higher education institutions (HEIs), all of whom haveexperience of carrying out health-based doctoral ethnographies. These experi-ences cover a doctoral completion period for participants from 2002 to 2009.This, therefore, also spans the British transition period for university researchethics committees (URECs) in relation to an enhanced level of rigour inconjunction with that of the REC in the domains of health and social care(Dingwall 2008). Although the basis for increased ethical scrutiny of researchacross HEIs universally is heralded as benevolent and in the publics interests, aswell as being almost certainly irreversible, the often unquestioned assumption ofoverarching benefits to society and social research is open to challenge.Research Ethics Governance in the United KingdomIn the United Kingdom there has been a concerted attempt in recent years todramatically raise ethical standards in social research, following in the wake ofsimilar developments in the United States (Hammersley 2009). This escalation inethic review scrutiny comes under stringent research ethics frameworks andincludes all research studies, including those at doctoral level, and additionallyembraces a number of disciplines with traditional allegiances to qualitative360 SARA ASHENCAEN CRABTREEDownloaded by [UQ Library] at 21:04 21 November 2014methodological approaches (Alderson & Morrow 2006). The move has beenstrongly influenced by the increased rigour of ethical procedures governingresearch in the health and social care sectors, under the National Health Services(NHS) and social services (Alderson & Morrow 2006).The Economic & Social Research Council (ESRC) is viewed as instrumental inthese developments in demanding ethical regulation of academic social scienceresearch (Hammersley 2009).The ESRC additionally seeks to impose sanctions on universities to encouragehigher doctoral completion rates (Tinkler & Jackson 2000). These havetraditionally been relatively low compared to other degrees; the HigherEducation Funding Council for England (HEFCE) reports that after seven yearsof study by 2005 only two-thirds of full-time doctoral candidates had successfullycompleted (Irving 2006). In addition, until recently in the United Kingdomdoctoral studies have been relatively free from bureaucratic intervention.However, some HEIs have since rushed to tighten postgraduate regulationsthrough, for instance, doctoral codes of practice and similar strategies, asrequired by the Quality Assurance Agency (QAA) (Eley & Murray 2009). Designedto minimise attrition rates, the codes at British universities are highlyprescriptive in outlining the duration of study, residency issues, supervisorytasks and candidate responsibilities. Thus, doctoral candidates are now expectedto comply with stringent, bureaucratic management of their studies, and mustalso comply with all the ethical requirements demanded by ethics frameworksand those at their registered university.In terms of research of vulnerable groups, regulation of potentially intrusiveresearch involving NHS service users is now governed by Local Research EthicsCommittees (LRECs), under the overall coordination of the Department of Health(DoH) via the National Research Ethics Services (NRES) (DoH 2005, 2011;McLaughlin & Shardlow 2009). The reference to intrusive research may equallyrelate to randomised controlled trials or qualitative studies of patients, andrefers to research requiring informed consent (Johns 2007). Ethical proceduresunder these committees will duly refer to relevant legislation designed toregulate and safeguard care of vulnerable groups, such as those individualscoming under the Mental Health Act 1982 or the Mental Capacity Act 2005.Latterly the domain of social care has also been incorporated into the researchgovernance fold of the NRES under the Research Governance Framework (RGF)Social Care (Dominelli & Holloway 2008; McLaughlin & Shardlow 2009); a movethat now affects social work research, allied disciplines and areas of focus underthe broad banner of social science research. The RGF will also scrutinise researchthat encompasses research with people who lack capacity (McLaughlin &Shardlow 2009, p. 7).The influence of NRES governance on UK URECs has been strong and hasarguably resulted in an attitude of compliance towards replication of tightenedscrutiny in the majority of UK HEIs (Dingwall 2008; Boden et al. 2009). However,the process towards achieving NHS ethics approval, for example, is formidable,and involves the completion of a lengthy, complex document, which is thenRESEARCH ETHICS AND THE MORAL ENTERPRISE OF ETHNOGRAPHY 361Downloaded by [UQ Library] at 21:04 21 November 2014brought under scrutiny for approval via the NRES LREC network (Boden et al.2009). Thus, research proposals that focus on service user groups may need to gothrough a gamut of RECs*UREC, RGF and LREC (assuming that children are notinvolved, which would require additional REC approval)*before approval isgranted (McLaughlin & Shardlow 2009). It should be noted that RECs are notorchestrated as such but act as independent barriers, resulting in greater risk ofapplications being rejected at various stages of seeking ethics approval.The Moral Slippery Slope and Ethical AnchorsThe rationale for increased governance and bureaucratisation of research ethicsprocesses is often assumed to be a significant step upwards in the inevitableethical evolution, whose genesis officially began with the Nuremberg MedicalTrials, 194547, culminating in the Nuremberg Code, 1949, and later theDeclaration of Helsinki (Hugman et al. 2011). This creation myth of evolutionfrom grossly abusive moral chaos to regulated ethical order is one that Dingwall(2008, p. 2) serves to demolish with iconoclastic glee. Lunt and Fouche (2010,p. 223) in turn describe the hysteria . . . generated around the supposed dangers ofsocial research as an example of moral panic. In service to the drive towardsgreater ethical restrictions, a catalogue of research abuses is referred to where,for example, McLaughlin and Shardlow (2009) refer, among other incidents, to thescandal of the Tuskegee Syphilis study of 193272. Boden et al. (2009), forinstance, note some notorious cases of medical research in the United Kingdominvolving the harvesting of the internal organs of dead babies without parentalconsent in the 1990s at Alder Hey hospital. Given such cases and the peer grouppressure to rally to the cause of enhanced ethical approval processes, it is perhapsnot surprising that the liberty of PhD students in the Netherlands and Hong KongSAR to pursue studies that are unfettered by similar REC processes to those of theUnited Kingdom is viewed disapprovingly as research without accountability orreference to any other body (McLaughlin & Shardlow 2009, p. 5).This slippery slope line of argument assumes that without governingregulatory bodies controlling research conduct, ethical considerations have nofirm moorings and are therefore liable to drift into potentially abusive currents.Caution extended to academic researchers may be less likely to be applied toinsider practitioner researchers, where Lunt and Fouche (2010, p. 221) observethat in such cases researchers are regarded as better placed to carry outresearch, despite the inherent ethical concerns of blurred boundaries and vestedinterest. Redwood and Todres (2006) claim, however, that practitioner researchmay also be jeopardised in the new climate of ethics governance.In reference to external university-based researchers, Long and Fallon (2007)comment on the demise of trust towards the notion of self-regulated personalresponsibility on the part of researchers towards strict regulation and control byethics committees. Hammersley (2009) notes that institutional regulation rightly362 SARA ASHENCAEN CRABTREEDownloaded by [UQ Library] at 21:04 21 November 2014implies less responsibility carried by individual researchers to address ethical andmethodological concerns. Moreover, Parker et al. (2010, p. 24) in reference toHaggerty (2004), note the issue of ethics creep, where ethical issues pertainingto biomedicine and its potential consequences (Wiles et al. 2006) have beeninsidiously extended to social science research, despite great differences inresearch aims and approaches, data-gathering methods and analysis.Dingwall (2008) offers a useful analysis on the rapid rise of regulation inresearch ethics that impacts widely on the social sciences and which carriesconsiderable power over doctoral research. This hinges on the concept ofisomorphism (replication of successful models), which rests on the threeprocesses of coercive, mimetic and normative isomorphism, relating in turn toregulatory/legal coercion; the herd-like desire to emulate in order to reduce therisk of anomalous practice; or, finally, normative emulation connected to theinfluence of professional networks. Commensurately, the rise in researchgovernance in the United States as influential upon the United Kingdom; andthe influence of the health and social care ethics frameworks in turn on academicresearch, including doctoral research, form clear examples of this phenomenon.Dingwalls analysis clarifies our understanding of the paradigm shift (Kuhn 1996)in UREC procedures as essentially isomorphic with the resulting rise inreactionary perverse restraints on social research (Dingwall 2008, p. 11).These kinds of ethical restrictions are fiercely argued against by Dingwall(2006, 2008), who criticises the limiting of academic research freedom imposedon social scientists as undemocratic and damaging to social research. He statesthat although medical research upon human subjects can and has caused seriousharm to participants, the potential for the same degree of harm does not exist inthe social sciences. The danger is that the curtailment of social science researchin the broad area of health and social care tends to weed out all but the mostanodyne of studies.Although developments in ethics regulation in the United Kingdom form thecontext to this study, these resonate with a wider debate taking place inthe international academic arena in respect of research ethics processes and theimpact upon qualitative studies. Denzin (2009; 2010, p. 269), for example,considers how research proposals are evaluated ethically in the United States in aresearch climate essentially hostile towards qualitative research; and whererandomised control trials are regarded as setting a gold standard. Gotlib Conn(2008), in turn, refers to her study of a medical team dealing with congenitalintersex developmental problems in children. The focus of the research was thephysicians, with no attempt to gain access to patients because of RECproscriptions. Yet the strict ethical governance underpinning the research ethicsprocedures is argued to be inherently incongruent with and even antagonistictowards anthropological approaches, acting as an effective deterrent to socialresearch. This is ruefully contrasted with the ease of access to highly sensitivedata by journalists not bound to the same ethical restrictions in investigating theidentical study sites (Gotlib Conn 2008).RESEARCH ETHICS AND THE MORAL ENTERPRISE OF ETHNOGRAPHY 363Downloaded by [UQ Library] at 21:04 21 November 2014In contrast to Denzins view (2009, 2010), Fielding (2010, p. 125) commentsthat politically qualitative social research in the United Kingdom receives awarmer welcome than that apparently extended by the United States. However,Alderson and Morrow (2006), also in reference to the United Kingdom, observethat even those who seek more rigorous standards for social research tend tofocus on the negative aspects of REC scrutiny than on its benefits. Quoting fromone of the most dominant research funding bodies in the United Kingdom*theESRC*Alderson and Morrow (2010, p. 408) state that ethical vigilance shouldbe proportionate to the risks borne by research participants: and thereforethe potential gains should be explored in the REC process. Finally, Hammersley(2009), in turn, takes issue with the spurious assumption and appropriation ofethical expertise, over and above that of individual researchers.The Questionable Issue of Informed ConsentIn respect of increased REC scrutiny in health and social care in the UnitedKingdom, Tee and Lathlean (2004, pp. 53637) argue that the proliferation ofguidelines and codes of practice . . . indicate the level of concern for ensuring safepractice in research. This is particularly emphasised in terms of research withindividuals whose capacity for informed consent to participation in researchprogrammes is questionable. The UK Mental Capacity Act 2005 (MCA) addresses,among other issues, research studies and outlines a number of conditions forincluding research with people who lack capacity relating to personal and socialbenefits (Parker et al. 2010).The MCA states that there must be a balance between the benefits of researchand any drawbacks. In particular it includes the Kantian principle of not treatingpeople as means to ends, where the Western ethnocentric bias on the individualas more important than collective or scientific interests is apparent (McDonald2010). Although autonomy is emphasised, carers views must also be given dueweight. However, consent (or presumably otherwise) by the individual due tocoercive persuasion by others remains an area of uncertainty (McDonald 2010).Consent under the MCA relies on the individual being able to. have a general understanding of the decision and related consequences;. understand information related to the decision (such as consent forms);. weigh up the relative importance of the information;. communicate their decision even with assistance (Manthorpe et al. 2008).The Act assumes that such decisions will be arrived at through a level of lucidreasoning, although, as Brown (2011) points out, judgements are frequentlycoloured by emotions, personality traits and habit as much as by rationalprocesses. Thus, the issue of evaluating both capacity and consent under the MCAis open to ambiguity for research. This is particularly the case in relation to364 SARA ASHENCAEN CRABTREEDownloaded by [UQ Library] at 21:04 21 November 2014participant lucidity in retaining information relating to the decision (which forresearch purposes can be complex and nuanced). The decision-making act maybe motivated by emotion rather than reason, and may or may not be motivatedby personal interest in that particular study.The question of consent to participate is therefore a thorny issue and is thefulcrum upon which ethical research pivots. Informed consent may be framed asa relatively obvious and straightforward ethical procedure, encapsulated in suchstatements as:the research can only be ethical if it is explained and justified clearly enoughto enable anyone to give informed consent or refusal. (Alderson & Morrow 2006,p. 412)Our actions to ensure we had proper informed consent arose from a desire toensure we did not exploit our research participants. (Wiles et al. 2006, p. 286)Anthropologists such as Gotlib Conn (2008) would argue that consent is highlycomplex, open to continuous reaffirmation, and revolves primarily around theissue of trust and rapport developed between researcher and participant.Consent for REC approval is, however, often reconstructed into a compulsory,non-negotiable contract aimed at protecting the research institution (ratherthan the individual researcher) from any future claims of liability from theparticipant (Gotlib Conn 2008, p. 507). Boden et al. (2009) argue that thepurported safeguards guaranteed by informed consent are illusory in that theyare unable to protect participants from poor research outcomes, or in the notionthat co-constructed data can be altogether withdrawn by participants, a pointfurther developed by Redwood and Todres (2006). By its very nature, the risk-averse, legally oriented informed consent exercise also tends to subvert andundermine the egalitarian, respectful, collaborative relationship that lies at theheart of much social science research by introducing a discordant note of overtdistrust. Buckle et al. (2010), and Gotlib Conn (2008) argue for consent as anunfolding process, rather than as a single, audited episode. Redwood and Todres(2006) call for the use of ethical imagination to engage researcher andparticipant in the ongoing iterative process of consent towards sharing andconstructing an emerging epistemology. Wiles et al. (2006) draw interestingcomparisons between the caution exercised by experienced researchers in givingtheir own informed consent to a study of researchers views of informed consent,and these participants reports of the relative disinterest towards consent shownby participants in their own studies. Wiles et al. (2006, p. 295) explain this bysuggesting that these secondary participants originate from relatively powerlessgroups and are thereby assumed to be nave in their assumptions of good faith byresearchers.Without doubt exploitation of participants in ethnographic work can takeplace, and according to Stacey (1991), via the establishment of rapport betweenresearcher and participant. However, the quiet development of seeking paymentfor participation has altered this balance of power between researcher andRESEARCH ETHICS AND THE MORAL ENTERPRISE OF ETHNOGRAPHY 365Downloaded by [UQ Library] at 21:04 21 November 2014participant, raising new ethical questions (Head 2009). Nonetheless, the caveatregarding exploitation assumes that engagement in research carries no motiva-tional or actual benefits for participants, including those participants categorisedas vulnerable (Buckle et al. 2010). Equally, it is assumed that vulnerableparticipants in general are not able to convey their unwillingness to continue tooffer consent to participate either through verbal or non-verbal communication.This is both an ethical and practical consideration for researchers, as weakerconsent, leads to poor data (Miles & Huberman 1994, p. 291).Researching the VulnerableThe concept of vulnerability is a contested one. Despite the truism that mostpeople may claim to have experienced vulnerability in some form or another inthe course of a lifetime, this differs from the labelling of certain groups asvulnerable, with enormous ramifications attached in terms of researchparticipation. Buckle et al. (2010) describe how in the Canadian contextbereavement is considered to constitute vulnerability, indicating a lack ofcompetence on the part of the bereaved to consent to research. By contrast,the UK Care Standards Act 2000 defines the concept of vulnerability conserva-tively and pragmatically in terms of the need for service provision in a carehome; or where domiciliary care is provided due to need; or finally, where anadult is in receipt of prescribed medical professional services (Penhale & Parker2008).Accordingly, some critics have additionally questioned whether vulnerablepeople with mental health problems (irrespective of capacity) should becategorically excluded from research participation (Tee & Lathlean 2004;Hannigan & Allen 2003). Commensurate with REC conservatism in both Britainand Canada, the case of Holland (2007, p. 898) is instructive. She reports that herresearch application focusing on people with mental health problems wasrejected by an Australian UREC on the grounds of the safety of participantsand researcher, the researchers lack of training and clinical expertise and othersimilar objections.Others point out that individuals with long-term and serious mental illnessform an oppressed group in society, which presumably refers to their diminishedrights and general lack of visibility (Davies 2005). It is noteworthy that manyresearch accounts relating to the lives of people with mental health problems inBritain, for example, have been promoted by service user empowermentmovements and service users themselves, rather than academic researchers(Rogers et al. 1993; Read & Reynolds 1996). However, Hugman et al. (2011) statethat social work research in the United Kingdom has been characteristic in itsconcern to consistently explore service user perspectives with a view toembedding these in the context of improved practice and service provision,366 SARA ASHENCAEN CRABTREEDownloaded by [UQ Library] at 21:04 21 November 2014An even more marginalised group in society comprises those who suffer fromdementia, and this group is therefore subject to the MCA considerations, asoutlined above. The MCA establishes that research studies which do not gain RECapproval from the appropriate body are likely to be regarded as unlawful,although research proposals that are not approved by RECs are also tainted withthe stigma of being unethical. Some studies circumvent these ethical obstaclesby focusing instead on the carer perspective (Galvin et al. 2005; Todres & Galvin2005); or through secondary analysis of autobiographic material produced by thevulnerable, in this case people with dementia (Page & Keady 2010). This adds tothe valuable research canon of studies focusing on the narratives of people withdementia as offering important insights of relevance to practitioners, academicsand the general public (Gubrium 1986, 1993). Prominent individuals such as thescience fiction writer Terry Pratchett, diagnosed with Azheimers disease,provide a compelling challenge to the assumptions that the competence ofsufferers is seriously compromised by their condition. Nonetheless, Russell andTimmons (2009), in their study of life story work with this service user group,affirm how notoriously difficult ethical approval is to obtain for such research.Reed-Danahay (2001) argues for the therapeutic benefits of life history work withsuch groups. However, Parker et al. (2010, 2011) note that the MCA has markedlyinhibited researchers working in the area of vulnerability and social research. Acautionary conclusion to the issue of safeguarding the vulnerable from accessby researchers and, in turn, to research is offered by Boden et al. (2009, p. 742),who aptly observe that being labelled as vulnerable can, therefore, be deeplysilencing.Methodology and the Methodological ContextEthnographic methods and methodology, originally the hallmarks of anthropologyand sociology, are now employed as a research strategy by many academicdisciplines (Hammersley & Atkinson 2007; Hammersley 1990; Holloway & Todres2010). The naturalistic nature of ethnography, with its focus on culture, asbelief systems or as contested terrains of meanings, has frequently beenemployed in research on difficult-to-reach participants, often due to theirposition in closed environments in material, organisational and social terms(Savage 2000). Such milieus have often included science, and in particular thebiomedical culture and its actors (Gale 2010). Nonetheless, ethnography remainsconcerned essentially with the act of decoding these cultural milieus (vanMaanen 1988).In relation to health and social welfare topics, a search of the BritishLibrary holdings of UK doctoral theses over a 10-year period indicates that ofthe 22 ethnographic theses found using search strings incorporating the termethnography very few dealt with vulnerable participants directly, to use itsbroader connotations. Instead, the majority focused on exploring the profes-RESEARCH ETHICS AND THE MORAL ENTERPRISE OF ETHNOGRAPHY 367Downloaded by [UQ Library] at 21:04 21 November 2014sional or carer culture of care giving. However, it was precisely in the closedenvironment of the hospital setting that the doctoral studies discussed here tookplace; and from which some useful insights into the relative benefits of suchsocial research may be drawn.The aims of this preliminary exploratory study were to develop insights fromthe perceptions and experiences of doctoral-track postgraduates currently orformerly registered at British HEIs towards REC procedures and associatedassumptions; and how these may have influenced the proposed study. Thus,research questions underpinning this study were articulated as:(1) What kinds of REC processes and procedures were experienced by theparticipants?(2) How far did REC processes shape the proposed study and what were theimplications for the researcher and for the participants?(3) What implications for ethnographic research in health domains can bedrawn?The participants in this study, including the author, were selected through bothopportunistic sampling and snowballing strategies. The inclusion criteria forparticipants required experience of undertaking ethnographic doctoral researchstudies in health-based institutional settings between 2001 and 2010, and wherethe subject of their work concentrated on patients/service users who could bedescribed as vulnerable.Two of the doctoral studies targeted people with dementia in England. Thesewere both completed in 2008 and from the same HEI. The Middle Eastern study isongoing and focuses on childbearing in a region torn by civil strife and with a highmaternal mortality rate. The authors study, completed in 2003, dealt with thetopic of psychiatric patients in an institution in Asia. All the participants werewhite British women drawn from an interdisciplinary academic sample. Thus,Carols background lies in nursing, Hannahs is sociology; Ruths is midwifery,and the author is a social work academic.Data from these participants were collected through intensive interviewingtechniques and via long-distance media. Where possible an examination ofdoctoral theses contributed to the data, relevant extracts of which arereproduced here. Data were subjected to strategies at multiple levels to identifyrecurrent and single instances towards the identification of key themes as thefindings of the study (Miles & Huberman 1994).My own experiences and supplementary data are explored as reflexive, auto-ethnographic data, which I duly compared with that of participants (Aull Davies1999). Reflexivity in qualitative research seeks to make transparent theprocesses of research, revealing its underpinning assumptions as grounded inand emerging from the personal/professional location of the researcher; andthus carries an intrinsic ethical aim (Boden et al. 2009). However, auto-ethnography takes the reflexive process a step further, in which the subject of368 SARA ASHENCAEN CRABTREEDownloaded by [UQ Library] at 21:04 21 November 2014the study is self; and where personal experiences are juxtaposed with theconstraints and influences of the external world (Muncey 2010). Reflexivity inauto-ethnography enables the reflective process to move back and forthbetween personal narratives, encompassing contexts, and social forms (deFreitas & Paton 2008, p. 483). For the purposes of this paper, the social formsrefer to the doctoral process, while the encompassing context relates to widerethical governance.The limitations of this study include the very small-scale sample used,although the even more restricted in-depth single case study is a well-recognisedstrategy, in primarily phenomenology (Todres & Galvin 2005). In this study, thesmall sample has permitted in-depth, intensive interviewing to be conducted inkeeping with standard ethnographic methods, in addition to an analysis ofsupplementary data. Implications drawn from the findings contribute to thedebate on ethical standards and the conducting of social research in restricteddomains of health settings.In terms of ethical issues pertaining to this study, the titles of theses andnames of study sites remain confidential, as do all references to the real identityof participants where names used act as aliases. Finally, comparisons acrossthese accounts should not be read as evaluative of the quality of research in therespective theses, which is an issue not in question.Findings: A Comparative Exploration of Research NarrativesGaining Ethics ApprovalMy research was qualitative and NHS committees are highly quantitative, so theycouldnt understand the messiness of ethnography. They wanted interviewschedules and so on. I found the X [University] codes of ethics reasonable andhelpful. Not too prescriptive, you had a margin of judgement and professionalcommonsense . . . a paler version of the NHS ethics really. But for the NHSeverything has to be precise and in ethnography you cant predict. Thats the funbit! But getting people to understand! I had some fabulous conversations [withparticipants] in the end. But it was as though they [REC] were saying What canyou get from that [ethnography]. Its not science! Once I got research ethicsapproval, I got approval from the [Hospital] Trust. Access was fairly easy as thehospital knew me. I was a trusted person to go in. I was well known tothe consultant psychogeriatrician. I wonder if I was lucky because I was known.I got a head start. (Carol. Patients with dementia in a hospital setting, England,2008)Carols account reflects a number of important issues. Firstly, it confirms, inthis instance at least, how far UREC considerations now reflect those of the morepowerful DoH Frameworks, as an example of isomorphism, as posited by Dingwall(2008). Furthermore, the account raises the issue of the unfamiliarity of RECexpertise at that time towards the ethnographic method. It is as yet unknownRESEARCH ETHICS AND THE MORAL ENTERPRISE OF ETHNOGRAPHY 369Downloaded by [UQ Library] at 21:04 21 November 2014how far this has been corrected in REC procedures (beyond the presumedknowledge-bases of URECs). However, ignorance of well-established qualitativeresearch methodologies, such as ethnography, is potentially a very seriousconcern for social scientists given the power of such committees to stall andeven veto otherwise valuable social research proposals. Alarmingly, Hannigan andAllen (2003) offer credence to such reports of methodological ignorance ofqualitative methodologies in ethics reviews.Interestingly, however, this account also refers specifically to the privileging ofthe insider position, where Carol is a known from her former NHS nursingrole and is duly entrusted with approval at the NHS REC, resonating with thediscussion by Lunt and Fouche on the perceived inherent suitability of practi-tioner-based research. This account is contrasted with that of Hannah who, as asociologist, has no such credentials:Ive no health care background at all so I had difficulty getting NHS ethicalapproval. My ethnography was based in a hospital study and the ethicscommittee . . .were uncomfortable with me being on the wards the whole time.So I could only go when I had a special interview or meeting, which I had pre-arranged. I couldnt just come and go as I pleased . . . It was just a normal smallhospital. (Hannah. People with dementia, hospital setting, England, 2008)Hannah draws a firm conclusion that owing to her unknown, academicoutsider status to the NHS (regardless of research capability), this createdobstacles in carrying out her study that, as we shall see, altered the direction ofthe ethnographic journey decisively. The notion of discomfort, as expressed bythe REC, at the presence of the outsider on the ward is interesting in itself:who is the subject of the discomfort and why? Is this to protect the patients,the staff or both? Indeed, what kinds of influences may be brought to bear onsocial research, when the preferential researcher is perceived as havingsufficient prior acculturation into the hospital system, as evidenced by Carolsaccount?The Ideology of Informed ConsentDue scrutiny of procedures to gain informed consent of any research participantsis integral to the REC process. This, as is well known, is a document-basedpractice with the aim of gathering signatories from targeted subject groups inorder for data gathering to proceed. However, this apparently cut-and-dried,fundamentally bureaucratic exercise carries its own questionable assumptionsand power dynamics that may serve to militate against, rather than promote,ethical research. It is one instance, moreover, where all the eventualities arisingfrom the context and the ontological realities of the research encounter inethnographic methodology cannot be fully prepared for in advance. This obligesthe researcher to address both the pragmatic and ethical considerations, not370 SARA ASHENCAEN CRABTREEDownloaded by [UQ Library] at 21:04 21 November 2014separately but as integral and simultaneous, in order to satisfy not merely therituals of ethics governance but the moral integrity of the research encounter inall its complexity and nuance.Czymoniewicz-Klippel et al. (2010) discuss the neglected ethical topic of theappropriateness and cultural relevance of imposing standard Westernisedresearch protocols on local populations whose understanding of these processesmay be quite at variance. In my study, owing to a complex set ofcircumstances involving registration at an English university, employment at alocal Asian university, and necessary contact with the local health authorities,my research proposal needed to pass through two URECs and two additionalformal scrutinies before data gathering could commence. A condition of theEnglish REC was the conventional need for signed consent forms fromparticipants, which assumed a host of shared cultural understandings andvalues, not to mention a level of functional/cognitive and literacy compatibleto the task. My experiences in turn resonate with the accounts offered byRuth and Carol in relation to illiteracy issues, in addition to the cognitiveabilities of participants.The X [local country] Ministry of Public Health (MoPH) has its own InstitutionalReview Board (IRB). All research in the area of health has to go through thisreview board. A mixture of locals and foreigners are part of the board and theyare quite strict in their requirements and accountability. Because I was requiredto submit an application to the X MoPH IRB my supervisors decided that it wasunnecessary to submit one in the UK. This was a big relief to me as I wasconcerned about my proposal being assessed by an IRB that would notunderstand the context and some of my study design, such as not havingwritten consent for my community focus groups, as the majority of them maywell be illiterate. (Ruth. Perceptions of childbirth in Middle Eastern hospitals,ongoing)The staff wanted informed consent but that was difficult for these participantsand with my professional expertise I believed I could spot people who didntwant me around. I went through relatives to ask permission and they wouldusually say, yes, you can approach them [participants]. It was hard morallybecause I wanted to treat patients with as much respect as possible. I never gotgenuine informed consent because NHS [consent] forms easily run to three orfour pages*people [participants] lose the will. In reality they just wantedsomeone to talk to them. (Carol)The ideology underpinning the concept of informed consent is essentially a uni-directional process: the research project is explained to participants. Theirsignatures are gathered as proof of agreement of participation in the event thatsuch agreement is later rescinded or denied. The verbal explanation, by contrast,is more likely to permit interaction, where explanation can become a conversa-tion, and one where the parameters and conditions for participation can be moreeasily negotiated between parties, equalised by dialogue. This is in fact whatCarol and I both relied on after abortive attempts to adhere to the informedRESEARCH ETHICS AND THE MORAL ENTERPRISE OF ETHNOGRAPHY 371Downloaded by [UQ Library] at 21:04 21 November 2014consent guidelines; and which seems equally inappropriate for blanket coverageof Ruths participants.Accessing Participant PerspectivesIn-depth interviews, whether through unstructured, open-ended or, far lesscommonly, structured schedules, are one of the quintessential methods of datagathering in ethnography. Originally, there was a commitment by all fourethnographers featured here to undertake interviews with those most directlyaffected by hospital services: service users and patients. This desire isarticulated by Ruth, a novice ethnographer who has yet to carry out datagathering for her study.I want to hear the participants stories, hear their thoughts, their hopes and fearsand their frustrations. I want them to trust me enough to share these things withme*not just to tell the foreigner what she wants to hear. I want them to knowthat I am interested to hear how things really are*the good and the bad. It isalways a privilege to hear peoples stories and usually people enjoy sharing theirstories with someone who is honestly listening. These days however that is notthe usual relationship between foreigners and locals. Too often we, as foreigners,rush in with answers to questions people are probably not even asking; andsolutions to problems that dont actually exist in their world. Too often there isno time to really connect and everyone seems to be in survival mode: foreignerswith results to produce and locals with daily life to manage and disaster to avoid.(Ruth)Hannah, however, was denied permission from the REC to gather accounts frompatients with dementia:(The study) was based on two rehabilitation wards. It was quite frustrating thatI couldnt do my study as I wanted to [due to REC decision]. I was absolutelydevastated when I heard, but it worked out for the best because I didnt getembroiled in hierarchical, professional boundaries . . . I dont think it impededthe study. It wasnt a university restriction, more of an NHS one . . . I wasntallowed any contact with the patients according to the ethics committee,because I didnt have a health care background. So I wasnt allowed to touchthem or talk to them or anything. I didnt gain their [service users] perceptionat all, as I quite rigidly didnt interview them because of the ethics committeeruling. I was still able to comment on the patient environment by the odd fiveminutes when I would be waiting for a staff meeting to start or to host aninterview, as naturally you observe interactions. But I couldnt make anyjudgement calls on what was going on [or] how they were feeling etc.(Hannah)Although initially the REC decision appeared to have derailed the original focus ofthe study, by the time of this interview Hannah had rationalised the outcome asnot a significant impediment, but merely a change in direction. Yet such a372 SARA ASHENCAEN CRABTREEDownloaded by [UQ Library] at 21:04 21 November 2014potentially serious detraction can to some extent be evaluated by Carols study,which is qualitatively different in describing the hospital environment fordementia patients, since in her case there was no such bar:One thing that really struck me was how if phrased right people [participants]showed levels of insight I wouldnt have expected. There was a differencebetween the functional conversations in health and the kind of things theynoticed, their ability to say what they felt. Nurses were writing them off but they[participants] say beautiful and sharp things. (Carol)During the conversations it became clear that Ben was thinking about the futureand what it might hold for him. He said to me dont know whats happening tome . . . do I stay here forever? . . . People never look and they never speak, thedoctors and that, they come in, theres a reason for it but its not verysatisfying . . . Its horrible sometimes, the feelings horrible, for one thing theychange their ideas. (Extract taken from Carols thesis)The muted voice of individuals, particularly the most vulnerable members ofsociety, living in institutional care clearly provides crucial insights that remaininaccessible through solely observation techniques or interviews with careproviders. In my own study of psychiatric patients the topic of medical treatmentwas solicited on numerous occasions, eliciting some remarkable accounts. Theseprovided a poignant but powerful counterbalance to the more dominanthegemony of biomedical interpretation or the alternative accounts offered bystaff, as the following quote from a female in-patient indicates:On Ward 1 A., my droll, eloquent X informant gave a lyrical yet graphic accountof her experience of ECT treatment.A: When not well*when mind is chronic*your speaking not a structure*imaginethings*hearing voices. ECT*with a current all over your head and a wire in yourhand*a needle in your hand . . .Vibrations of sound make us giddy*it radiates themind in circulation . . . First an injection is given, half asleep, half aware*feelingof something afloat*drifting slowly and slowly*fast asleep. Like a thundermoving with a storm. Like a sea breeze with the wave . . . Very painfuland giddy [holding temples], vomiting*under our chest got pain . . .WhenI got my 3rd ECT this year, when I was 36 (years old)*I was awake25 minutes . . .Not very good, ECT. Sometimes destroys our organic systems.(Author. Thesis notes)Although in these examples only one researcher was specifically denied access toparticipants, it is instructive to reflect on the access negotiated by the remainingresearchers in their respective studies. Carols reputational privilege as aninsider was unique in this example; however, Ruths study and my own havetaken place in developing countries internationally. As such, despite undergoingthe rigours of ethics review systems initially, greater latitude to makemethodological and ethical judgements was probably permitted in field sitesthat lay beyond the control of the DoH Frameworks, but were controlled byRESEARCH ETHICS AND THE MORAL ENTERPRISE OF ETHNOGRAPHY 373Downloaded by [UQ Library] at 21:04 21 November 2014different indigenised interpretations of research ethics and research gains.In these cases, permitting research to be undertaken made possible valuableresearch encounters and the undamming of potentially rich narratives of little-heard experiential phenomena.DiscussionDingwalls (2008) concept of isomorphism enables us to understand the permea-tion of stringent ethics reviews internationally and as it impacts upon the UnitedKingdom. Furthermore, this is enlightening in relation to the striving of HEIstowards institutional legitimacy in the hugely competitive terrain of postgrad-uate studies within the wider, and increasingly fraught, context of research.Thus, isomorphism demands an HEIs compliancy towards the dictates ofpowerful bodies involved in higher education, such as the HEFCE, the QAA andthe ESRC. Additionally, there is a need to conform to the external ethicalgovernance, such as that held by NHS RECs, in the control over research access tocertain participant populations.However, of far greater importance than these considerations is the issue ofthe control of research participation. In terms of social research, constraints inrelation to access are overtly in place for the protection of vulnerable groups,yet this in turn creates some serious ethical issues (Boden et al. 2009). RECrestrictions can actively prevent participation by potential participants, layingsuch prohibitive procedures open to Dingwalls (2006) charge of lack ofdemocracy in research, and the stifling of social research (Parker et al. 2011,p. 380). Service user involvement in REC scrutinies is another developing idea(Parker et al. 2010); while useful, this implies a level of tokenism. In addition, itassumes homogeneity among categories of service users, together with theproblematic vesting of authority to token service users to represent thoseselected categories in REC proceedings. Irrespective of these issues, RECprevention can be argued to be not merely paternalistic but actually exclu-sionary, and therefore oppressive in preventing the voices of those mostaffected by services to be heard, as Hannahs experiences indicate.Narratives that have emerged from obscurity through the struggles of serviceuser movements have normally been regarded as emancipatory. However, withinthe discourses and ideology of many REC guidelines and procedures, similarattempts to elicit service user accounts may be deemed intrinsically harmful toparticipants. These proposed studies are therefore prevented from beingapproved and thereby pronounced to be essentially unethical (Parker et al.2010Parker et al. 2011). A risk-averse REC climate consequently serves not somuch to protect the vulnerable but to reinforce the overt and effectivedisenfranchisement of marginalised groups in society.374 SARA ASHENCAEN CRABTREEDownloaded by [UQ Library] at 21:04 21 November 2014ConclusionThe tightening of control over social research has emerged through two maindevelopments, which are progressively more interconnected. Firstly, theincreased level of ethics scrutiny in the health and social care Framework hasencouraged HEIs to respond by tightening UREC procedures to address this newlevel of rigour. The outcome of this development overall for HEIs is to approveproposals with great caution where these refer to vulnerable sample groups;and to deter those proposed studies likely to be subject to further REC scrutinyand which may fall at the first hurdle. The obvious repercussion is thestultification of numbers of potentially valuable studies that seek to comeinto direct contact with service user groups to explore and understand thelived experience. The discouragement of certain avenues of inquiry, thosewhich may be viewed as fundamentally risky with a view to damaging aninstitutions reputation or the risk of litigation, is then channelled into theperipheries of the critical research encounter, carrying important implicationsfor social scientists. 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