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

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Research Ethics and the MoralEnterprise of Ethnography:Conjunctions and ContradictionsSara Ashencaen CrabtreePublished online: 17 Jul 2012.

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Research Ethics and the Moral Enterpriseof Ethnography: Conjunctions andContradictions

Sara Ashencaen Crabtree

This 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; Health

Introduction

This paper reviews ethical considerations in undertaking ethnographic research

with service user/patient populations in the context of increasing ethical scrutiny

in research ethics committee (REC) processes at university level. These are

powerfully influenced by those governing health and social research in the United

Kingdom, and which taken in unison create formidable barriers to such research.

Accordingly, the impact of these tighter control mechanisms is explored in terms

of future ethnographic research, specifically in relation to doctoral research in

# 2013 Taylor & Francis

Dr 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: [email protected]

Ethics and Social Welfare, 2013Vol. 7, No. 4, 359�378, http://dx.doi.org/10.1080/17496535.2012.703683

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http://dx.doi.org/10.1080/17496535.2012.703683

the United Kingdom, but with wider implications for qualitative research in the

social science academy.

Despite challenges to the research odyssey of the solo researcher in their

singular development of a narrative construction of a phenomenon (Lee 2008),

for most social science postgraduates the traditional solitary quest for immersion

into a phenomenon to achieve deep insights, characteristic of ethnography, fits

the demands of doctoral research well. Furthermore, the diverse but esoteric

‘culture’ of health care has been a compelling subject for a number of

ethnographers (Estroff 1985; Savage 2000; Holloway & Todres 2010).A crucial aspect of ethnography carrying substantial relevance to the debate

and discourse on research ethics is ethnography’s ability to uncover and amplify

the voices of individuals, which may otherwise remain muted and unheard in the

wider public space. Consequently, ethnography can reveal the largely unseen or

un-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 School’s focus on constructing ethnographies of the

socially obscure and disenfranchised in the non-exotic but distinctive and little-

known marginal terrains of a nation (Deegan 2001). The use of the word ‘moral’

therefore carries specific and deliberate overtones for the discussions rehearsed

in this paper, where, in reference to Kleinman (1995) and Gotlib Conn (2008),

morals underpin the personal commitment to principled enactments and

interactions in the social world, while ethics tends to constitute a codified

corpus of stated principles, usually professionally identified.This paper draws upon a comparative analysis of the accounts of four

academics at British higher education institutions (HEIs), all of whom have

experience 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 research

ethics committees (URECs) in relation to an enhanced level of rigour in

conjunction with that of the REC in the domains of health and social care

(Dingwall 2008). Although the basis for increased ethical scrutiny of research

across HEIs universally is heralded as benevolent and in the public’s interests, as

well as being almost certainly irreversible, the often unquestioned assumption of

overarching benefits to society and social research is open to challenge.

Research Ethics Governance in the United Kingdom

In the United Kingdom there has been a concerted attempt in recent years to

dramatically raise ethical standards in social research, following in the wake of

similar developments in the United States (Hammersley 2009). This escalation in

ethic review scrutiny comes under stringent research ethics frameworks and

includes all research studies, including those at doctoral level, and additionally

embraces a number of disciplines with traditional allegiances to qualitative

360 SARA ASHENCAEN CRABTREE

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methodological approaches (Alderson & Morrow 2006). The move has been

strongly influenced by the increased rigour of ethical procedures governing

research 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 in

these developments in demanding ethical regulation of academic social science

research (Hammersley 2009).The ESRC additionally seeks to impose sanctions on universities to encourage

higher doctoral completion rates (Tinkler & Jackson 2000). These have

traditionally been relatively low compared to other degrees; the Higher

Education Funding Council for England (HEFCE) reports that after seven years

of study by 2005 only two-thirds of full-time doctoral candidates had successfully

completed (Irving 2006). In addition, until recently in the United Kingdom

doctoral studies have been relatively free from bureaucratic intervention.

However, some HEIs have since rushed to tighten postgraduate regulations

through, for instance, doctoral codes of practice and similar strategies, as

required by the Quality Assurance Agency (QAA) (Eley & Murray 2009). Designed

to minimise attrition rates, the codes at British universities are highly

prescriptive in outlining the duration of study, residency issues, supervisory

tasks and candidate responsibilities. Thus, doctoral candidates are now expected

to comply with stringent, bureaucratic management of their studies, and must

also comply with all the ethical requirements demanded by ethics frameworks

and those at their registered university.In terms of research of vulnerable groups, regulation of potentially ‘intrusive’

research involving NHS service users is now governed by Local Research Ethics

Committees (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 equally

relate to randomised controlled trials or qualitative studies of patients, and

refers to research requiring ‘informed consent’ (Johns 2007). Ethical procedures

under these committees will duly refer to relevant legislation designed to

regulate and safeguard care of vulnerable groups, such as those individuals

coming under the Mental Health Act 1982 or the Mental Capacity Act 2005.

Latterly the domain of social care has also been incorporated into the research

governance fold of the NRES under the Research Governance Framework (RGF)

Social Care (Dominelli & Holloway 2008; McLaughlin & Shardlow 2009); a move

that now affects social work research, allied disciplines and areas of focus under

the broad banner of social science research. The RGF will also scrutinise research

that encompasses research with people who ‘lack capacity’ (McLaughlin &

Shardlow 2009, p. 7).The influence of NRES governance on UK URECs has been strong and has

arguably resulted in an attitude of compliance towards replication of tightened

scrutiny 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 then

RESEARCH ETHICS AND THE MORAL ENTERPRISE OF ETHNOGRAPHY 361

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brought 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 go

through a gamut of RECs*UREC, RGF and LREC (assuming that children are not

involved, which would require additional REC approval)*before approval is

granted (McLaughlin & Shardlow 2009). It should be noted that RECs are not

orchestrated as such but act as independent barriers, resulting in greater risk of

applications being rejected at various stages of seeking ethics approval.

The Moral ‘Slippery Slope’ and Ethical Anchors

The rationale for increased governance and bureaucratisation of research ethics

processes is often assumed to be a significant step upwards in the inevitable

ethical evolution, whose genesis officially began with the Nuremberg Medical

Trials, 1945�47, culminating in the Nuremberg Code, 1949, and later the

Declaration of Helsinki (Hugman et al. 2011). This ‘creation myth’ of evolution

from 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 of

social research’ as an example of ‘‘‘moral panic’’’. In service to the drive towards

greater ethical restrictions, a catalogue of research abuses is referred to where,

for example, McLaughlin and Shardlow (2009) refer, among other incidents, to the

scandal of the Tuskegee Syphilis study of 1932�72. Boden et al. (2009), for

instance, note some notorious cases of medical research in the United Kingdom

involving the harvesting of the internal organs of dead babies without parental

consent in the 1990s at Alder Hey hospital. Given such cases and the peer group

pressure to rally to the cause of enhanced ethical approval processes, it is perhaps

not surprising that the liberty of PhD students in the Netherlands and Hong Kong

SAR to pursue studies that are unfettered by similar REC processes to those of the

United Kingdom is viewed disapprovingly as research ‘without accountability or

reference to any other body’ (McLaughlin & Shardlow 2009, p. 5).

This ‘slippery slope’ line of argument assumes that without governing

regulatory bodies controlling research conduct, ethical considerations have no

firm moorings and are therefore liable to drift into potentially abusive currents.

Caution extended to academic researchers may be less likely to be applied to

‘insider’ practitioner researchers, where Lunt and Fouche (2010, p. 221) observe

that in such cases researchers are regarded as ‘better placed’ to carry out

research, despite the inherent ethical concerns of blurred boundaries and vested

interest. Redwood and Todres (2006) claim, however, that practitioner research

may 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 personal

responsibility on the part of researchers towards strict regulation and control by

ethics committees. Hammersley (2009) notes that institutional regulation rightly


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implies less responsibility carried by individual researchers to address ethical and

methodological concerns. Moreover, Parker et al. (2010, p. 24) in reference to

Haggerty (2004), note the issue of ‘ethics creep’, where ethical issues pertaining

to biomedicine and its potential consequences (Wiles et al. 2006) have been

insidiously extended to social science research, despite great differences in

research aims and approaches, data-gathering methods and analysis.Dingwall (2008) offers a useful analysis on the rapid rise of regulation in

research ethics that impacts widely on the social sciences and which carries

considerable power over doctoral research. This hinges on the concept of

isomorphism (replication of successful models), which rests on the three

processes of coercive, mimetic and normative isomorphism, relating in turn to

regulatory/legal coercion; the herd-like desire to emulate in order to reduce the

risk of anomalous practice; or, finally, normative emulation connected to the

influence of professional networks. Commensurately, the rise in research

governance in the United States as influential upon the United Kingdom; and

the influence of the health and social care ethics frameworks in turn on academic

research, including doctoral research, form clear examples of this phenomenon.

Dingwall’s analysis clarifies our understanding of the ‘paradigm shift’ (Kuhn 1996)

in UREC procedures as essentially isomorphic with the resulting rise in

reactionary ‘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 imposed

on social scientists as undemocratic and damaging to social research. He states

that although medical research upon human subjects can and has caused serious

harm to participants, the potential for the same degree of harm does not exist in

the social sciences. The danger is that the curtailment of social science research

in the broad area of health and social care tends to weed out all but the most

anodyne of studies.Although developments in ethics regulation in the United Kingdom form the

context to this study, these resonate with a wider debate taking place in

the international academic arena in respect of research ethics processes and the

impact upon qualitative studies. Denzin (2009; 2010, p. 269), for example,

considers how research proposals are evaluated ethically in the United States in a

research climate essentially hostile towards qualitative research; and where

randomised control trials are regarded as setting a ‘gold standard’. Gotlib Conn

(2008), in turn, refers to her study of a medical team dealing with congenital

‘intersex’ developmental problems in children. The focus of the research was the

physicians, with no attempt to gain access to patients because of REC

proscriptions. Yet the strict ethical governance underpinning the research ethics

procedures is argued to be inherently incongruent with and even antagonistic

towards anthropological approaches, acting as an effective deterrent to social

research. This is ruefully contrasted with the ease of access to highly sensitive

data by journalists not bound to the same ethical restrictions in investigating the

identical study sites (Gotlib Conn 2008).


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In contrast to Denzin’s 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 to

focus on the negative aspects of REC scrutiny than on its benefits. Quoting fromone of the most dominant research funding bodies in the United Kingdom*the

ESRC*Alderson and Morrow (2010, p. 408) state ‘that ‘‘ethical vigilance’’ shouldbe ‘‘proportionate to the risks borne by research participants’’’: and therefore

the 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 Consent

In respect of increased REC scrutiny in health and social care in the United

Kingdom, Tee and Lathlean (2004, pp. 536�37) argue that the ‘proliferation ofguidelines and codes of practice . . . indicate the level of concern for ensuring safe

practice in research’. This is particularly emphasised in terms of research withindividuals whose capacity for informed consent to participation in research

programmes 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 social

benefits (Parker et al. 2010).The MCA states that there must be a balance between the benefits of research

and any drawbacks. In particular it includes the Kantian principle of not treatingpeople as means to ends, where the Western ethnocentric bias on the individual

as more important than collective or scientific interests is apparent (McDonald2010). Although autonomy is emphasised, carers’ views must also be given due

weight. 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 frequently

coloured by emotions, personality traits and habit as much as by rationalprocesses. Thus, the issue of evaluating both capacity and consent under the MCA

is open to ambiguity for research. This is particularly the case in relation to


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participant lucidity in retaining information relating to the decision (which for

research purposes can be complex and nuanced). The decision-making act may

be motivated by emotion rather than reason, and may or may not be motivated

by personal interest in that particular study.The question of consent to participate is therefore a thorny issue and is the

fulcrum upon which ethical research pivots. Informed consent may be framed as

a relatively obvious and straightforward ethical procedure, encapsulated in such

statements 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 highly

complex, open to continuous reaffirmation, and revolves primarily around the

issue 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 (rather

than the individual researcher) from any future claims of liability from the

participant (Gotlib Conn 2008, p. 507). Boden et al. (2009) argue that the

purported safeguards guaranteed by informed consent are illusory in that they

are unable to protect participants from poor research outcomes, or in the notion

that co-constructed data can be altogether withdrawn by participants, a point

further developed by Redwood and Todres (2006). By its very nature, the risk-

averse, legally oriented informed consent exercise also tends to subvert and

undermine the egalitarian, respectful, collaborative relationship that lies at the

heart of much social science research by introducing a discordant note of overt

distrust. Buckle et al. (2010), and Gotlib Conn (2008) argue for consent as an

unfolding process, rather than as a single, audited episode. Redwood and Todres

(2006) call for the use of ‘ethical imagination’ to engage researcher and

participant in the ‘ongoing iterative process’ of consent towards sharing and

constructing an emerging epistemology. Wiles et al. (2006) draw interesting

comparisons between the caution exercised by experienced researchers in giving

their own informed consent to a study of researchers’ views of informed consent,

and these participants’ reports of the relative disinterest towards consent shown

by participants in their own studies. Wiles et al. (2006, p. 295) explain this by

suggesting that these secondary participants originate from ‘relatively powerless

groups’ and are thereby assumed to be naıve in their assumptions of good faith by

researchers.Without doubt exploitation of participants in ethnographic work can take

place, and according to Stacey (1991), via the establishment of rapport between

researcher and participant. However, the quiet development of seeking payment

for participation has altered this balance of power between researcher and


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participant, raising new ethical questions (Head 2009). Nonetheless, the caveat

regarding exploitation assumes that engagement in research carries no motiva-

tional or actual benefits for participants, including those participants categorised

as ‘vulnerable’ (Buckle et al. 2010). Equally, it is assumed that vulnerable

participants in general are not able to convey their unwillingness to continue to

offer consent to participate either through verbal or non-verbal communication.

This is both an ethical and practical consideration for researchers, as ‘weaker

consent, leads to poor data’ (Miles & Huberman 1994, p. 291).

Researching the ‘Vulnerable’

The concept of ‘vulnerability’ is a contested one. Despite the truism that most

people may claim to have experienced vulnerability in some form or another in

the course of a lifetime, this differs from the labelling of certain groups as

‘vulnerable’, with enormous ramifications attached in terms of research

participation. Buckle et al. (2010) describe how in the Canadian context

bereavement is considered to constitute vulnerability, indicating a lack of

competence 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 care

home; or where domiciliary care is provided due to need; or finally, where an

adult is in receipt of prescribed medical professional services (Penhale & Parker

2008).

Accordingly, some critics have additionally questioned whether ‘vulnerable’

people with mental health problems (irrespective of capacity) should be

categorically excluded from research participation (Tee & Lathlean 2004;

Hannigan & Allen 2003). Commensurate with REC conservatism in both Britain

and Canada, the case of Holland (2007, p. 898) is instructive. She reports that her

research application focusing on people with mental health problems was

rejected by an Australian UREC on the grounds of the ‘safety of participants

and researcher, the researcher’s lack of training and clinical expertise’ and other

similar objections.

Others point out that individuals with long-term and serious mental illness

form an oppressed group in society, which presumably refers to their diminished

rights and general lack of visibility (Davies 2005). It is noteworthy that many

research accounts relating to the lives of people with mental health problems in

Britain, for example, have been promoted by service user empowerment

movements and service users themselves, rather than academic researchers

(Rogers et al. 1993; Read & Reynolds 1996). However, Hugman et al. (2011) state

that social work research in the United Kingdom has been characteristic in its

concern to consistently explore service user perspectives with a view to

embedding these in the context of improved practice and service provision,


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An even more marginalised group in society comprises those who suffer from

dementia, and this group is therefore subject to the MCA considerations, as

outlined above. The MCA establishes that research studies which do not gain REC

approval from the appropriate body are likely to be regarded as unlawful,

although research proposals that are not approved by RECs are also tainted with

the stigma of being unethical. Some studies circumvent these ethical obstacles

by focusing instead on the carer perspective (Galvin et al. 2005; Todres & Galvin

2005); or through secondary analysis of autobiographic material produced by the

‘vulnerable’, in this case people with dementia (Page & Keady 2010). This adds to

the valuable research canon of studies focusing on the narratives of people with

dementia as offering important insights of relevance to practitioners, academics

and the general public (Gubrium 1986, 1993). Prominent individuals such as the

science fiction writer Terry Pratchett, diagnosed with Azheimer’s disease,

provide a compelling challenge to the assumptions that the competence of

sufferers is seriously compromised by their condition. Nonetheless, Russell and

Timmons (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 with

such groups. However, Parker et al. (2010, 2011) note that the MCA has markedly

inhibited researchers working in the area of vulnerability and social research. A

cautionary conclusion to the issue of safeguarding the ‘vulnerable’ from access

by 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 deeply

silencing’.

Methodology and the Methodological Context

Ethnographic methods and methodology, originally the hallmarks of anthropology

and sociology, are now employed as a research strategy by many academic

disciplines (Hammersley & Atkinson 2007; Hammersley 1990; Holloway & Todres

2010). The naturalistic nature of ethnography, with its focus on ‘culture’, as

belief systems or as contested terrains of meanings, has frequently been

employed in research on difficult-to-reach participants, often due to their

position in closed environments in material, organisational and social terms

(Savage 2000). Such milieus have often included science, and in particular the

biomedical culture and its actors (Gale 2010). Nonetheless, ethnography remains

concerned essentially with the act of ‘decoding’ these cultural milieus (van

Maanen 1988).

In relation to health and social welfare topics, a search of the British

Library holdings of UK doctoral theses over a 10-year period indicates that of

the 22 ethnographic theses found using search strings incorporating the term

‘ethnography’ very few dealt with vulnerable participants directly, to use its

broader connotations. Instead, the majority focused on exploring the profes-


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sional or carer ‘culture’ of care giving. However, it was precisely in the closed

environment of the hospital setting that the doctoral studies discussed here took

place; and from which some useful insights into the relative benefits of such

social research may be drawn.The aims of this preliminary exploratory study were to develop insights from

the perceptions and experiences of doctoral-track postgraduates currently or

formerly registered at British HEIs towards REC procedures and associated

assumptions; 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 the

participants?

(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 be

drawn?

The participants in this study, including the author, were selected through both

opportunistic sampling and ‘snowballing’ strategies. The inclusion criteria for

participants required experience of undertaking ethnographic doctoral research

studies in health-based institutional settings between 2001 and 2010, and where

the subject of their work concentrated on patients/service users who could be

described as vulnerable.

Two of the doctoral studies targeted people with dementia in England. These

were both completed in 2008 and from the same HEI. The Middle Eastern study is

ongoing and focuses on childbearing in a region torn by civil strife and with a high

maternal mortality rate. The author’s study, completed in 2003, dealt with the

topic of psychiatric patients in an institution in Asia. All the participants were

white British women drawn from an interdisciplinary academic sample. Thus,

‘Carol’s’ background lies in nursing, ‘Hannah’s’ is sociology; ‘Ruth’s’ is midwifery,

and the author is a social work academic.

Data from these participants were collected through intensive interviewing

techniques and via long-distance media. Where possible an examination of

doctoral theses contributed to the data, relevant extracts of which are

reproduced here. Data were subjected to strategies at multiple levels to identify

recurrent and single instances towards the identification of key themes as the

findings 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 Davies

1999). Reflexivity in qualitative research seeks to make transparent the

processes of research, revealing its underpinning assumptions as grounded in

and emerging from the personal/professional ‘location’ of the researcher; and

thus carries an intrinsic ethical aim (Boden et al. 2009). However, auto-

ethnography takes the reflexive process a step further, in which the subject of


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the study is self; and where personal experiences are juxtaposed with the

constraints and influences of the external world (Muncey 2010). Reflexivity in

auto-ethnography enables the reflective process to ‘move back and forth

between personal narratives, encompassing contexts, and social forms’ (de

Freitas & Paton 2008, p. 483). For the purposes of this paper, the social forms

refer to the doctoral process, while the encompassing context relates to wider

ethical 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-recognised

strategy, in primarily phenomenology (Todres & Galvin 2005). In this study, the

small sample has permitted in-depth, intensive interviewing to be conducted in

keeping with standard ethnographic methods, in addition to an analysis of

supplementary data. Implications drawn from the findings contribute to the

debate on ethical standards and the conducting of social research in restricted

domains of health settings.

In terms of ethical issues pertaining to this study, the titles of theses and

names of study sites remain confidential, as do all references to the real identity

of participants where names used act as aliases. Finally, comparisons across

these accounts should not be read as evaluative of the quality of research in the

respective theses, which is an issue not in question.

Findings: A Comparative Exploration of Research Narratives

Gaining Ethics Approval

My research was qualitative and NHS committees are highly quantitative, so theycouldn’t 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 can’t predict. That’s 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]. It’s 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)

‘Carol’s’ account reflects a number of important issues. Firstly, it confirms, in

this instance at least, how far UREC considerations now reflect those of the more

powerful DoH Frameworks, as an example of isomorphism, as posited by Dingwall

(2008). Furthermore, the account raises the issue of the unfamiliarity of REC

expertise at that time towards the ethnographic method. It is as yet unknown


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how far this has been corrected in REC procedures (beyond the presumed

knowledge-bases of URECs). However, ignorance of well-established qualitative

research methodologies, such as ethnography, is potentially a very serious

concern for social scientists given the power of such committees to stall and

even veto otherwise valuable social research proposals. Alarmingly, Hannigan and

Allen (2003) offer credence to such reports of methodological ignorance of

qualitative methodologies in ethics reviews.

Interestingly, however, this account also refers specifically to the privileging of

the ‘insider’ position, where ‘Carol’ is a ‘known’ from her former NHS nursing

role and is duly entrusted with approval at the NHS REC, resonating with the

discussion by Lunt and Fouche on the perceived inherent suitability of practi-

tioner-based research. This account is contrasted with that of ‘Hannah’ who, as a

sociologist, has no such credentials:

I’ve 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 couldn’t 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, academic

‘outsider’ status to the NHS (regardless of research capability), this created

obstacles in carrying out her study that, as we shall see, altered the direction of

the ethnographic journey decisively. The notion of discomfort, as expressed by

the 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 on

social research, when the preferential researcher is perceived as having

sufficient prior acculturation into the hospital system, as evidenced by ‘Carol’s’

account?

The Ideology of Informed Consent

Due scrutiny of procedures to gain informed consent of any research participants

is integral to the REC process. This, as is well known, is a document-based

practice with the aim of gathering signatories from targeted subject groups in

order for data gathering to proceed. However, this apparently cut-and-dried,

fundamentally bureaucratic exercise carries its own questionable assumptions

and power dynamics that may serve to militate against, rather than promote,

ethical research. It is one instance, moreover, where all the eventualities arising

from the context and the ontological realities of the research encounter in

ethnographic methodology cannot be fully prepared for in advance. This obliges

the researcher to address both the pragmatic and ethical considerations, not


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separately but as integral and simultaneous, in order to satisfy not merely the

rituals of ethics governance but the moral integrity of the research encounter in

all its complexity and nuance.Czymoniewicz-Klippel et al. (2010) discuss the neglected ethical topic of the

appropriateness and cultural relevance of imposing standard Westernised

research protocols on local populations whose understanding of these processes

may be quite at variance. In my study, owing to a complex set of

circumstances involving registration at an English university, employment at a

local Asian university, and necessary contact with the local health authorities,

my research proposal needed to pass through two URECs and two additional

formal scrutinies before data gathering could commence. A condition of the

English REC was the conventional need for signed consent forms from

participants, which assumed a host of shared cultural understandings and

values, not to mention a level of functional/cognitive and literacy compatible

to the task. My experiences in turn resonate with the accounts offered by

‘Ruth’ and ‘Carol’ in relation to illiteracy issues, in addition to the cognitive

abilities 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 didn’twant 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. Their

signatures are gathered as proof of agreement of participation in the event that

such 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 more

easily negotiated between parties, equalised by dialogue. This is in fact what

‘Carol’ and I both relied on after abortive attempts to adhere to the informed


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consent guidelines; and which seems equally inappropriate for blanket coverageof ‘Ruth’s’ participants.

Accessing Participant Perspectives

In-depth interviews, whether through unstructured, open-ended or, far lesscommonly, structured schedules, are one of the quintessential methods of data

gathering 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 is

articulated by ‘Ruth’, a novice ethnographer who has yet to carry out datagathering for her study.

I want to hear the participant’s 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 people’s 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 don’t 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 from

patients with dementia:

(The study) was based on two rehabilitation wards. It was quite frustrating thatI couldn’t 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 didn’t getembroiled in hierarchical, professional boundaries . . . I don’t think it impededthe study. It wasn’t a university restriction, more of an NHS one . . . I wasn’tallowed any contact with the patients according to the ethics committee,because I didn’t have a health care background. So I wasn’t allowed to touchthem or talk to them or anything. I didn’t gain their [service users’] perceptionat all, as I quite rigidly didn’t 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 couldn’t 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 of

the study, by the time of this interview ‘Hannah’ had rationalised the outcome asnot a significant impediment, but merely a change in direction. Yet such a


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potentially serious detraction can to some extent be evaluated by ‘Carol’s’ study,

which is qualitatively different in describing the hospital environment for

dementia 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 wouldn’t 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 ‘don’t know what’s happening tome . . . do I stay here forever? . . . People never look and they never speak, thedoctors and that, they come in, there’s a reason for it but it’s not verysatisfying . . . It’s horrible sometimes, the feeling’s horrible, for one thing theychange their ideas. (Extract taken from ‘Carol’s’ thesis)

The muted voice of individuals, particularly the most vulnerable members of

society, living in institutional care clearly provides crucial insights that remain

inaccessible through solely observation techniques or interviews with care

providers. In my own study of psychiatric patients the topic of medical treatment

was solicited on numerous occasions, eliciting some remarkable accounts. These

provided a poignant but powerful counterbalance to the more dominant

hegemony of biomedical interpretation or the alternative accounts offered by

staff, 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 to

participants, it is instructive to reflect on the access negotiated by the remaining

researchers in their respective studies. Carol’s reputational privilege as an

‘insider’ was unique in this example; however, Ruth’s study and my own have

taken place in developing countries internationally. As such, despite undergoing

the rigours of ethics review systems initially, greater latitude to make

methodological and ethical judgements was probably permitted in field sites

that lay beyond the control of the DoH Frameworks, but were controlled by


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different indigenised interpretations of research ethics and research gains.

In these cases, permitting research to be undertaken made possible valuable

research encounters and the undamming of potentially rich narratives of little-

heard experiential phenomena.

Discussion

Dingwall’s (2008) concept of isomorphism enables us to understand the permea-

tion of stringent ethics reviews internationally and as it impacts upon the United

Kingdom. Furthermore, this is enlightening in relation to the striving of HEIs

towards institutional legitimacy in the hugely competitive terrain of postgrad-

uate studies within the wider, and increasingly fraught, context of research.

Thus, isomorphism demands an HEI’s compliancy towards the dictates of

powerful bodies involved in higher education, such as the HEFCE, the QAA and

the ESRC. Additionally, there is a need to conform to the external ethical

governance, such as that held by NHS RECs, in the control over research access to

certain participant populations.

However, of far greater importance than these considerations is the issue of

the control of research participation. In terms of social research, constraints in

relation 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). REC

restrictions can actively prevent participation by potential participants, laying

such prohibitive procedures open to Dingwall’s (2006) charge of lack of

democracy 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, it

assumes homogeneity among categories of service users, together with the

problematic vesting of authority to token service users to represent those

selected categories in REC proceedings. Irrespective of these issues, REC

prevention can be argued to be not merely paternalistic but actually exclu-

sionary, and therefore oppressive in preventing the ‘voices’ of those most

affected by services to be heard, as ‘Hannah’s’ experiences indicate.

Narratives that have emerged from obscurity through the struggles of service

user movements have normally been regarded as emancipatory. However, within

the discourses and ideology of many REC guidelines and procedures, similar

attempts to elicit service user accounts may be deemed intrinsically harmful to

participants. These proposed studies are therefore prevented from being

approved and thereby pronounced to be essentially unethical (Parker et al.

2010Parker et al. 2011). A risk-averse REC climate consequently serves not so

much to protect the vulnerable but to reinforce the overt and effective

disenfranchisement of marginalised groups in society.


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Conclusion

The tightening of control over social research has emerged through two main

developments, which are progressively more interconnected. Firstly, the

increased level of ethics scrutiny in the health and social care Framework has

encouraged HEIs to respond by tightening UREC procedures to address this new

level of rigour. The outcome of this development overall for HEIs is to approve

proposals with great caution where these refer to vulnerable sample groups;

and to deter those proposed studies likely to be subject to further REC scrutiny

and which may fall at the first hurdle. The obvious repercussion is the

stultification of numbers of potentially valuable studies that seek to come

into direct contact with service user groups to explore and understand the

‘lived experience’. The discouragement of certain avenues of inquiry, those

which may be viewed as fundamentally risky with a view to damaging an

institution’s reputation or the risk of litigation, is then channelled into the

peripheries of the critical research encounter, carrying important implications

for social scientists. The primary ethical consideration lies in the closed

opportunities this presents for many service users, excluding them from

participation in research seeking to record their experiences and accounts,

albeit usually within the unavoidable researcher construct of the interpretation

and textualisation of data (van Maanen 1988). Overall, if tighter regulation, in

terms of RECs and doctoral codes of practice, carries substantial benefits,

which has yet to be properly established, it is nevertheless clear that much of

value may be jeopardised in the process.

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Documents

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