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Social Science & Medicine 65 (2007) 2199–2211

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Changing constructions of informed consent: Qualitativeresearch and complex social worlds

Tina Millera,�, Mary Boultonb

aSchool of Social Sciences and Law, Oxford Brookes University, Gipsy Lane Campus, Headington, Oxford, Oxon OX3 OBP, UKbSchool of Health and Social Care, Oxford Brookes University, Gipsy Lane Campus, Headington, Oxford, Oxon OX3 OBP, UK

Available online 29 September 2007

Abstract

Informed consent is a concept which attempts to capture and convey what is regarded as the appropriate relationship

between researcher and research participant. Definitions have traditionally emphasised respect for autonomy and the right

to self-determination of the individual. However, the meaning of informed consent and the values on which it is based are

grounded in society and the practicalities of social relationships. As society changes, so too do the meaning and practice of

informed consent. In this paper, we trace the ways in which the meaning and practice of informed consent has changed

over the last 35 years with reference to four qualitative studies of parenting and children in the UK which we have

undertaken at different points in our research careers. We focus in particular on the shifting boundaries between the

professional and personal, and changing expressions of agency and power in a context of heightened perceptions of risk in

everyday life. We also discuss developments in information and communication technologies as a factor in changing both

the formal requirements for and the situated practicalities of obtaining informed consent. We conclude by considering the

implications for informed consent of both increasing bureaucratic regulation and increasingly sophisticated information

and communication technologies and suggest strategies for rethinking and managing ‘consent’ in qualitative research

practice.

r 2007 Elsevier Ltd. All rights reserved.

Keywords: Qualitative research; UK; Informed consent; Feminism; Parenting; Children

Introduction

In this paper we will argue that there is a growingmismatch between increasingly standardised ethicsprocedures and the complex nature of qualitativesocial research and that there are dangers inherentin assuming ethical universalism. Our concerns arisefrom of our own experiences of doing qualitativeresearch over many years and facing ever closer

e front matter r 2007 Elsevier Ltd. All rights reserved

cscimed.2007.08.009

ing author. Tel.: +441865 483764.

ess: tamiller@brookes.ac.uk (T. Miller).

regulation by research ethics committees (RECs). Inqualitative research, attempts to standardise proce-dures and regulate ethical practice, for examplethrough the production and signing of a consentform, acts as a mechanism to ‘contain’ what areoften, in reality, complex social worlds and researchencounters which do not fit neatly into boxes whichcan be ticked. ‘Informed consent’ is a sociallyconstructed concept and so subject to the forces ofsocial change and it is this which forms the focus ofour arguments as we chart 35 years of qualitativeresearch practice and social change. Taking a

.

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Box 2

Study 2: Transition to motherhood study.This UK study, conducted by TM as part ofher Ph.D. in the mid-1990s, explored howchanges in women’s lives around the birthof their first child impacted on theirexperiences and identities as mothers(Miller, 2005). Potential participants(women in late pregnancy with their firstchild) were identified using snowballingtechniques through her own socialnetworks and asked to contact her by letteror telephone. Eventually 17 women did soand were invited by telephone to take partin a longitudinal study, involving threeinterviews over 11 months, about theirexperiences of transition to motherhood.Following the final interview a short postalquestionnaire was sent to participants inorder to collect demographic data and toask about experiences of being a

T. Miller, M. Boulton / Social Science & Medicine 65 (2007) 2199–22112200

retrospective view enables us to trace the ways inwhich the meaning and practice of informed consenthave shifted during this period. We draw on fourqualitative studies of parenting and children under-taken by one or other of us at different timesbetween 1972 and 2007 in the UK. These are brieflyoutlined in Boxes 1–4. Each of these studies wasconducted from a consciously feminist perspective,focused on health-related and/or transitional as-pects of family life and adopted semi-structuredqualitative interview methods for data collection. Inrelation to managing informed consent we examineshifting boundaries between the professional andpersonal in research relationships and changingexpressions of agency and power in the context ofheightened perceptions of risk. Cutting across thesethemes, we consider how both the formal require-ments for and the situated practicalities of obtainingconsent have been shaped by developments incommunication technologies. We conclude by con-sidering the implications of this discussion for amore sociologically informed approach to informedconsent.

Box 1

Study 1: On being a mother.This UK study focused on women’sexperience as mothers and was conductedin the early 1970s by MB as part of herPh.D. (Boulton, 1983). Drawing on theirhealth visitors’ lists, GPs in two areas ofLondon provided her with the names andaddresses of women who had at least onechild under the age of 5 years. Shecontacted these women in person,knocking on their doors unannounced tointroduce herself and explain the study.Women were invited to take part in aninterview, conducted on two occasions aweek apart, about their daily lives asmothers. Their understanding of the studyand their willingness to take part in it wereconsidered essential to the success of theinterview and their consent and co-operation were sought in this context. Noformal procedures for obtaining ordocumenting consent were eitherconsidered or required.

participant in the study. Informed consentwas again seen as an integral part of therecruitment process and, once aninterview had been arranged and accessgiven to the participant’s home, no formalprocedures for obtaining or documentingconsent were required or considered.

Fluid social worlds and informed consent

Our paper is theoretically informed by the workof those who have charted social change at the turnof the 21st century and the characteristics ofcontemporary Western society (Beck & Beck-Gernsheim, 1995; Beck, Bonss, & Lau, 2003;Giddens, 1990; 1991; 1994; Lash, 1994; Lupton,1999; Sheller & Urry, 2003) and those who, overmany years, have problematised and critiquedresearch paradigms, qualitative practices and re-search relationships (Bell & Roberts, 1984; Birch &Miller, 2002; Finch, 1984; Mason, 1996; Mauthner,Birch, Jessop, & Miller, 2002; Oakley, 1981;Ribbens & Edwards, 1998). Both these bodies ofwork resonate with the retrospection undertaken inthis paper and help to illuminate the shifts whichhave occurred in relation to the practices ofqualitative research and understandings of informed

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Box 4

Study 4: Transition to fatherhood.This UK study, which is still in progress atthe time of writing (2007), is TM’s study ofhow men experience the changesassociated with the birth of their first childand how they construct their roles andidentities as fathers. Approval by theUniversity’s Research Ethics Committeewas required before the research couldcommence. The intention is to interviewup to 20 men three times over the courseof the 11 months, as in the Transition toMotherhood study. To date 16 men havebeen recruited and are participating in thestudy. Potential participants identifythemselves by responding to posters and/or leaflets in shops and work premiseswhich invite them to volunteer to take partin the study. Those who are interested inreceiving more information are asked tocontact TM either by telephone or email orvia a stamped addressed postcardenclosed in the leaflets. To date, mostparticipants have opted in to the study bycompleting the postcard and haveincluded their email address and mobilephone number as part of their contactdetails. Subsequently, email has been themain mode of communication in thestudy. Informed consent is initiallynegotiated through this medium asinformation sheets are sent by email andarrangements for interviews are discussedand agreed in subsequent emailexchanges. Nevertheless, formalprocedures for obtaining anddocumenting informed consent are alsoobserved before the start of the firstinterview when the study is againexplained and men are asked to sign aconsent form at that time consenting to allthree interviews.

Box 3

Study 3: Families and children with visionimpairment.This UK study, begun in 2000 by MB andseveral colleagues, looked at theexperience of parents caring for childrenwith significantly impaired vision.Potential participants were identifiedthrough a range of health, education andsocial service organisations who providedservices for children with impaired visionand a number of voluntary organisationsand family support groups. Theseorganisations forwarded the studyrecruitment packs to those of theirpatients/clients/members whom theythought met our recruitment criteria. Therecruitment pack included an invitationletter, an information sheet and a replycard which had been reviewed andapproved by the University ResearchEthics Committee and four NHS ethicscommittees. Initial contact with potentialparticipants was made through the returnof the reply card which specified how andwhen the interviewers could contact themto provide further details on the study.Sixty-eight parents agreed to take part in asemi-structured interview about their own,their child’s and their family’s experienceof childhood vision impairment and tocomplete a lengthy structuredquestionnaire. Procedures for obtainingand documenting informed consentconstituted a distinct stage in the researchprocess, after initial contact had beenmade with potential participants andbefore interviewing began and compriseda detailed information sheet, verbalexplanations and a consent form to sign.

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consent. In order to look back, to contemplatechanges in research practice and to move forwardtowards a more sociologically informed approach toinformed consent, we now chart the nature of socialchange before moving on to consider changes inresearch ethics and informed consent.

The question of how Western societies havechanged through the period of interest has exerciseda number of contemporary social theorists. Theirdebates have focused on the parameters and

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characteristics of continuity and change in societiesand the impact of these on societal structures andindividual lives. A key concern has been tocharacterise the nature of the apparent shift fromprevious times implied through discussions of themovement from ‘modernity’ to ‘late’, ‘high’, ‘post’‘second’ and/or ‘reflexive’ modernity (Beck, Gid-dens, & Lash, 1994; Beck et al., 2003; Giddens;1990, 1991, 1994; Venn & Featherstone, 2006). Ofparticular relevance to our discussions of informedconsent are their accounts of the ways contempor-ary society has become more uncertain than inprevious periods and how this has manifested itselfin relation to structural change and individualexperiences. As Beck et al. (2003, p. 2) assert, it isnot that modernity has ‘vanished’ but rather ‘‘it isbecoming increasingly problematic’’.

Accounts of the nature of social change providethe context for our understanding of the shifts inmeaning and practice of informed consent. In theperiod of late- or post-modernity, established waysof doing, thinking and being are being questionedand social life is characterised by ambivalence,insecurity and disorder. The ‘certainties’ of previoustimes—for example the nature and pattern ofworking life, ‘gender fates’, the clear separation ofpubic and private spheres, and the sovereigntyof the nation state—can no longer be relied uponor predicted (Beck & Beck-Gernsheim, 1995; Becket al., 2003; Sheller & Urry, 2003). Descriptions ofcontemporary society as ‘erratic’, ‘transformative’,‘uncertain’, ‘fluid’ and ‘risky’ underscore the morecomplex character of this period and point to thedevelopment of a new global society ‘‘connectedthrough electronic media and transnational eco-nomic and cultural forces’’ (Swingewood, 2000,p. 245). In this increasingly uncertain world,relationships have become more fluid and lesstethered in traditional patterns and have resultedin both greater individual choice and increasedfragmentation of social and cultural life (Beck et al.,2003; Sheller & Urry, 2003). This in turn has led to agreater need for individuals to reflexively makesense of their experiences. Maintaining ‘ontologicalsecurity’ has thus become a feature of individualagency and the project of the self in more complexand uncertain settings (Birch & Miller, 2002;Giddens, 1991, 1994; Miller, 2005; Lash, 1994;Lupton, 1999).

In relation to qualitative research in the socialsciences the effect of these cumulative societalchanges has not only led to a shift in the arenas in

which we research, but also to new concerns withmanaging and containing the uncertainty of re-search encounters. In many ways concerns withrequirements of informed consent in social scienceresearch have emerged as a response to morecomplex, uncertain and apparently risky times(Beck, 1992; Lupton, 1999). Over the last 35 yearsthis has involved a ‘medicalisation’ of informedconsent associated with the formalisation andstandardisation of consent procedures and thedocumentation of consent; a move from self-regulation to external regulation; and an increasingfocus on the ‘rights’ and protection of researchparticipants. This shift from a moral discourse to adiscourse of regulation (Ashcroft, 2003) is examinedin the following section.

The changing face of research ethics: From a moral

discourse to the discourse of regulation

Informed consent is based on the ethical princi-ples of respect for the dignity and worth of everyhuman being and their right to self-determination.Its prominence within ethical research practice canbe traced back to its central position in theNuremberg Code (1947), written in response tothe atrocities of Nazi experiments on humansubjects. While the Nuremberg Code was not thefirst statement of ethical principles for research(Weindling, 2004), it is perhaps the most influential,informing both the Universal Declaration of Hu-man Rights (United Nations, 1948) and theDeclaration of Helsinki (1964). Informed consentwas instituted as the main mechanism for protectingresearch participants from exploitation and harm.The Declaration of Helsinki, drawn up by theWorld Medical Association (WMA), made it anabsolute requirement for medical research involvinghuman participants, stating that ‘subjects must bevolunteers and informed participants in the researchproject’ (WMA, 1964, point 20). The notion ofinformed consent was subsequently adopted bysocial scientists in drafting their own professionalcodes of conduct for research (listed at end ofreferences) although in a somewhat different form:in contrast to medical research, consent was not anabsolute requirement and where the interests ofscience required it, covert research and deceptionwere acknowledged as acceptable (Bryman, 2004;Jowell, 1986, p. 482).

Between the early 1970s and the late 1980s, mostprofessional organisations for social scientists in the

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UK had agreed a code of practice for the ethicalconduct of research. Members were expected tointernalise their code of practice and to use it as aguide to decision making in research practice. Thisform of self-regulation reflected a ‘moral’ discourseof research ethics, concentrating on individualagency and the personal responsibility of theresearcher for his/her relationship with participantsand their well-being (Ashcroft, 2003). By contrast,within medical research the Declaration of Helsinki(WMA, 1964, point 13) had already established theprinciple of external regulation of research, requir-ing researchers to submit their research protocols‘for consideration, comment, guidance and, whereappropriate, approval to a specially appointedethical review committee’. These committees wereto act in the interests of the participants in research,ensuring that their welfare was not compromisedand that their agreement to take part was ade-quately informed and freely given.

Over the 35 years of interest to us here, a numberof the developments associated with the shift to late-or post-modernity outlined earlier served to chal-lenge the right of social scientists to self-regulationin the conduct of their research, to increase theextent of external control by RECs and to raise theprofile of informed consent. The most striking ofthese has been a series of well-publicised ‘scandals’1

(Beauchamp, Faden, Wallace, & Walters, 1982;Bryman, 2004; Guardian, 2005) which have in-creased the sense of risk associated with research,undermined public trust in researchers and givenrise to calls for tighter regulation of researchpractice. Changes in the organisation of researchhave also helped to draw social sciences further intothe ‘regulatory’ discourse of research ethics (Ash-croft, 2003), with an increasing emphasis on multi-disciplinary and international research challengingcultural assumptions about appropriate ethicalpractice and bringing researchers into contact withdifferent regulatory regimes.

The consequences of these developments can beseen in the spread of ethics review structures

1Recent examples include the Alder Hey organ retention

scandal in which body parts were taken from dead children

without their parents’ knowledge; the death of Ellen Roche, a 24-

year-old healthy volunteer who died during a study on acute

asthma at Johns Hopkins University, Baltimore in 2001; and the

admission of six young men to intensive care following

catastrophic multi-system failure during a trial of a new

monoclonal antibody in 2006 (Goodyear, 2006; The Royal

Liverpool Children’s Inquiry, 2001).

around the world and the steady extension of theirremit to include social science research. In theUSA, Institutional Review Boards (IRBs) wereestablished by the mid-1960s, and their requirementfor social and behavioural research reaffirmed inthe mid-1970s (Gray, 1982; Tropp, 1982). InCanada, Research Ethics Boards (REBs) wereinstituted in relation to medical research in 1977and social science research in 1987 (Tri-CouncilPolicy Statement, 2003); similar requirements wereadopted in a number of other countries includingNorway (1990) and Australia (1997). In the UK,Local Research Ethics Committees (LRECs) wereestablished to review medical research in the early1990s although not made mandatory until 1997(Department of Health, 1994, 1997). In 2001, theDepartment of Health Research GovernanceFramework (RGF), prompted in part by publicconcern about the practice of obtaining and storinghuman body parts for research and also byimpending European Union regulations regardingclinical trials, marked a turning point for socialscientists in the UK. This framework extended therequirement for research ethics review to socialresearch, which involved patients, carers or healthcare professionals. This entailed review by an NHSresearch ethics committee (REC) according to thestandards and procedures set out by the CentralOffice for Research Ethics Committees (COREC,2005). At the heart of this was the traditionalrequirement for medical research that all partici-pants be informed volunteers and a set of standardprocedures for ensuring—and documenting—thatthis was the case: that is, the requirement that eachparticipant be given an information sheet providingthe details of the study and their right to decline totake part in it and be asked to sign a consent form.The RGF also specified the responsibilities offunders and sponsors of research which includedensuring that research protocols were reviewed byan appropriate REC. Funders of medical researchsuch as the Wellcome Trust made this a requirementof every institution in receipt of their funding, anduniversities in the UK in turn reviewed andincreased their structures and processes for researchethics review (Tinker, 2004). In the context ofincreasing concern among social scientists that theirwork would be reviewed from an inappropriatemedical perspective, the Economic and SocialResearch Council commissioned and published itsown Research Ethics Framework (Webster, Lewis,Brown, & Boulton, 2004).

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The emphasis placed on informed consent, andformal procedures to document it, has been furtherstrengthened by the growth of consumerism and theassociated challenge to professional dominancewhich have given greater voice to participants andtheir representatives in the research process. Interestin consumer feedback, patient satisfaction and layexpertise has also fuelled a growth in researchactivity which focuses on the experience of theindividual. Those who participate in research,initially described as research ‘subjects’ have beenrecast as ‘participants’ (Birch & Miller, 2002, p. 91),and more recently as ‘partners’. Representatives ofthe population of interest in a study, or theiradvocacy/support groups, are now expected to beinvolved in all stages of the design and conduct ofresearch (INVOLVE, 2004) and consumer groupssuch as Consumers for Ethics in Research (CERES,2005) actively promote informed consent as a basichuman right.

The shift from a moral discourse to one of greaterregulation clearly places current practices of informedconsent at the centre of ethical concerns in socialscience research. We argue that these standard andformalised practices do not sufficiently accommodatethe social context in which qualitative research is nowcarried out. For example, implicit in the currentrequirements of medical RECS is the conceptualisa-tion of research participants as rational, individual,modernist—and Western—subjects for whom theconcept of informed consent and its documentationby a signed form is unproblematic (Alldred & Gillies,2002; Miller, 2005; Miller & Bell, 2002; Reissman,2005). Similarly, the notion of giving consent that isinformed presupposes both an understanding of thenature and purpose of the research and knowledge ofhow it will proceed. But as noted above, individuallives and social interactions are increasingly uncertainand complex and research relationships do notnecessarily correspond to this model of interaction.Issues around trust, confidentiality, anonymity, re-sponsibility, unanticipated disclosures in the interviewand understandings of participation can all confoundthe best research plans. It is clear then that inqualitative research the interview can and should beguided by good ethical motives and practice, but thateach research encounter—and understanding andpractice of consent within it—will be unique. In thefollowing sections we reflect on how we havemanaged matters related to informed consent in ourvarious research projects over the 35 years underreview.

Shifting boundaries between the personal and

professional

A retrospective view across 35 years of qualitativeresearch reveals a clear shift from distinct andhierarchical roles of researcher and research parti-cipant to one where the relationship has becomemore fluid and multi-faceted, reflecting elements ofwider societal change. Across our research threedistinct shifts are discernible with regard to howresearch boundaries have been configured. Theseinvolve feminist challenges to traditional, positivistresearch practice, changes in researcher/researchedrelationships and more contemporary concerns withdevelopments in information and communicationtechnologies. In turn each of these shifts hasimplications for the ways in which we haveconceived of and practiced informed consent.

In the 1970s MB began her motherhood studyjust as feminist researchers had begun to questionboth traditional, positivist paradigms of the re-search relationship and associated epistemologicalclaims to ‘knowledge’. Prior to this time the‘appropriate’ relationship between researcher andinterviewer was impersonal and objectifying, with adetached researcher ‘extracting’ information from apassive respondent (Oakley, 1981). MB wanted tochallenge this orthodoxy and like other feministresearcher’s was committed to a more reciprocal,collaborative style of research. This involved estab-lishing ‘genuine rapport’ based on a sense ofsolidarity with the women in her study andattempting to diminish any overt power imbalancein the relationship (Finch, 1984; Oakley, 1981).Through this approach MB, like other feministresearchers at the time, sought to make visibleaspects of women’s lives in the private sphere whichhad previously been hidden (Oakley, 1981). In thisstudy, MB obtained, from their GPs, a list of namesand addresses of women who matched the char-acteristics of the group she was interested in—women with two or more children one of whom wasunder 5 years of age—and recruited them to herstudy on their doorsteps. Once they had agreed totake part, MB found that, having placed her as ayoung woman with a ‘natural’ interest in what itwas like to be a mother of young children, theywillingly described in detail their daily lives andreflected openly on what they had learned from theirown experience. This openness in their accounts tosomeone about whom they knew very little reflectedthe high level of trust they placed in her and their

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expectations that she would understand (and benefitfrom) what they were saying simply because she wasanother woman (Finch, 1984).

In the context of changing the nature of theresearch relationship, feminist approaches to re-search also cast new light on a range of ethical issuesin research involving women and raised questionsabout the meaning and practice of informed consentin feminist research. Traditional approaches toinformed consent, as made explicit in codes ofethical research practice, reflected the individualisedapproach to the research relationship inherent intraditional research paradigms. The concern inthese codes of practice was to protect the individualfrom risk, harm and exploitation through fulldisclosure of the nature of the research togetherwith the option to withdraw their participation atany time. Yet this protection as Finch (1984, p. 85)notes could only go so far. Indeed for MB, it wasthe sense of responsibility that she felt towards thewomen in her study which was more important inguiding her behaviour than the verbal consent thewomen gave at the beginning of the study. That is,their explicit statement of consent to the limitedrequest that they take part in an interview wasultimately of less significance than their impliedconsent to take part in the wider common enterpriseof, as Oakley (1981, p. 48) put it ‘‘making possiblethe articulated and recorded commentary of womenon the very personal business of being female in apatriarchal capitalist society’’. In agreeing to takepart in a study on women’s experience as mothersconducted by a young woman interviewer, theyhad established an expectation that their goodfaith in telling MB about their private lives wouldbe reciprocated by her good faith in represen-ting their lives in a way which would not underminethe interests of the women as mothers in general(Finch, 1984).

By the mid-1990s when TM was carrying out herstudy into motherhood, there was increasing recog-nition of ‘‘many versions of feminisms and manyvarieties of feminist research’’ (Fawcett & Hearn,2004, p. 206). But among these were continued andshared concerns with epistemology and the produc-tion of knowledge, the research process andresearcher reflexivity (Hill Collins, 1990; Mason,1996; Maynard & Purvis, 1994; Ribbens &Edwards, 1998; Stanley & Wise, 1993). Feminist-informed research through this period continued tobe characterised by a desire to empower researchparticipants and produce knowledge that could be

emancipatory. However, there was now a greaterconcern with ethical dilemmas emerging fromresearching private lives (still mostly women’s) andthen representing them in acceptable ways to publicacademic audiences (Ribbens & Edwards, 1998).These changing concerns called for more opennessand reflexivity on the part of the researcher. Therewere also calls for greater collaboration betweenresearcher and researched with participants invitedto read and comment on their interview transcripts,together with joint writing of research findings andcalls for more ‘meaningful’ ways of disseminatingfindings for example through poetry (Lather, 1991).So, while TM shared MB’s feminist approach toresearch-making visible women’s lives as mothers—she also found other aspects of the researchrelationship changed. For example, there wasgreater expectation on the part of the participantsthat the research could make a difference, ‘enligh-

tening us all’ as one mother said, in some wayjustifying their participation in and commitment tothe research. At the same time there was also greaterexpectations placed on the researcher who—reflect-ing shifts in role expectations—was at differenttimes expected to be a professional, expert, friend,confidante and counsellor (Birch & Miller, 2002;Duncombe & Jessop, 2002). TM found thatparticipants expected researchers to relate to themon a personal level (still a novel idea when MB wasresearching in the 1970s) and she felt obliged to doso, sharing some of her own experiences oftransition to motherhood when asked. TM alsofound that the less structured format of qualitativeresearch often led participants to reveal more aboutthemselves (and others) than they might haveintended—or consented to (Birch & Miller, 2002).In relation to considerations of informed consentthe question now focused on ‘consent to what?’What was it that participants were consenting toand how could researchers manage participant’sexpectations when qualitative interviews couldprovide the opportunity for self-reflection anddiscovery in an increasingly ‘therapeutic’ climate?For example, in TM’s motherhood study oneparticipant wrote in the end-of-study questionnaire(see Box 2) ‘I looked forward to relating my

experiences to Tina and felt the sessions were a

catharsis’.By 2000 when MB and colleagues began their

study on mothers of young children with visionimpairment, the feminist view of research as acollaborative enterprise had become institutionalised

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in a requirement that potential participants (or theirrepresentatives) be engaged as stakeholders in allaspects of the research. The research relationshipnow involved participants who had a stronger voicein the design, conduct and dissemination of researchyet she found that it had become more difficult torecruit participants to her study. In contrast toparticipants in her 1970s study, women were lesslikely to be at home during the day and had less timeand energy to talk to researchers. Changes in thepace and demands of individual lives—both of theresearcher and researched—also gave rise to con-cerns that ‘genuine rapport’ (Finch, 1984; Oakley,1981) was at times giving way to ‘faked friendship’(Duncombe & Jessop, 2002). Paradoxically, it seemsthat the collaborative spirit of research promoted byfeminists in the 1970s does not always resonate withsome more recent experience of participants andresearchers. Elements of participant fatigue had alsobecome apparent as some participants expressedscepticism about the value of taking part in thestudy. As a population of interest in medical,professional and policy terms, some of the familieshad already taken part in several studies and hadbegun to question both the value of research inbringing about improvements for others and thebalance of costs and benefits to themselves. Somelinked their reluctance to take part in the study toprevious experiences of research where informationhad been ‘extracted’ from them and they had thenbeen abandoned without feedback on the study orany apparent change in services. These individualschallenged the traditional focus of informed consentprocedures (on what participation will involve andwhat risks and benefits are entailed) by shifting thediscussion to the ways in which the study findingswould be used and pressing the researchers to usethem for specific, practical purposes or to addressservice issues of local concern. Clearly potentialparticipants are now more wary of the promises ofresearchers, more confident in resisting their effortsto recruit them and more strategic in negotiating thebasis on which they consent to take part in research.

Expectations of change at a personal level havebeen a feature of TMs most recent research onfatherhood. In this study some of the participantsaccessed via snowball sampling consented to join thestudy because they had heard from others that theexperience could be personally ‘cathartic’. Thisinstrumentality was absent in those participating inMB’s study in the 1970s and goes beyond the aims ofmore collective emancipatory research found in

earlier feminist research. More dramatic, however,has been the impact of electronic media in this study.Developments in information technology, especiallyemail, mobile phones and digital photographs haveblurred the boundaries of research relationship stillfurther. In the fatherhood study TM was required byher University REC to provide participants with aninformation sheet and to obtain written consent fromthem. But in spite of following formal consentprocedures, technological developments have raisednew questions about who is actually consenting towhat in the research relationship. For example, emailcontact as part of the process of recruiting partici-pants can engender a false sense that a ‘personal’relationship has been formed before the researcherand participant ever meet, giving an artificial sensethat each party ‘knows’ the other in advance. Suchcontact also raises the question of when the processof obtaining consent ends and data collectionbegins—are email ‘conversations’ data? These tech-nologies also make the researcher more available andaccessible and apparently more personally involvedin a participant’s life, for example by being added toblock emails of the participant’s friends and receivingemailed photographs of the new baby. As aconsequence of these technological developments,the researcher’s own privacy has become moredifficult to control. This raises new questions aboutwhat the researcher is consenting to when s/heestablishes a research relationship with a studyparticipant and how the boundaries of this relation-ship should be managed from the researcher’sperspective.

Increasingly, then, in qualitative research theresearcher has to tread a tricky path through thedemands of the shifting expectations of participantsand their own professional and personal needs andthe requirements of the REC. Can informed consentprocedures ever be sufficiently nuanced and sensi-tive enough to situations-as-they-emerge in thecontext of doing research (Truman, 2003)? Therehas been a tendency to conceive of informed consentas something that the researcher must obtain andthat those being researched can give rather thansomething to be thought about in relation to theresearcher. This issue is raised not because of anydesire to further bureaucratise processes of consentbut rather to emphasise the increasingly complex,multi-faceted and messy dimensions of researchencounters which cannot, and should not, beshackled by overly prescriptive informed consentrequirements.

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Agency, power and changing perceptions of ‘risk’

Individuals make decisions about participating inresearch and understand consent in circumstancesshaped by the society in which they live. As notedearlier, across the 35 years under review socialstructures and relationships in Western society havebecome increasingly complex and uncertain. Inthese more fluid, contingent and ambiguous con-texts, social life and relationships have come to beperceived as ‘risky’ (Beck, 1992; Lupton, 1999). In(post)modern society the nature of risk has changedfrom calculable probabilities to unknown eventsand unknowable consequences. Heightened percep-tions of risk then emerge as a response touncertainty which in turn require regulation inorder that they may be controlled and managed. Inthe following section we consider the implications ofsuch changes for the role now played by externalregulations and regulatory bodies, particularly theData Protection Act and RECs, and our under-standing and practice of consent. Across ourresearch we note particular changes in relation toaccess, recruitment and consent procedures and theclimate in which research is now carried out.

Attempts to manage risks have included anincrease in ‘surveillance’ (Lyon, 2001), which hasbeen greatly facilitated by the development ofinformation technologies, including the ability tohold, access and link information from a number ofsources. The collection and storage of data onindividuals has itself come to be perceived as a riskor a threat to individual privacy and autonomy.Practical attempts to counter this threat includelegislation to regulate access to information storedon individuals, most notably the Data ProtectionAct (1998) in the UK and similar legislation in othercountries. While such measures may go some waytowards limiting the potentially intrusive andcontrolling consequences of the accumulation ofdata, in research terms they have also created abarrier between researchers and potential partici-pants which may be detrimental to the interests ofboth. For example, the Data Protection Act hasmeant that it is no longer possible to obtain from aGP, as MB in the 1970s, the names and addresses ofindividuals who meet the criteria for participation ina particular study. Instead, we now have to rely oneither the co-operation of ‘gatekeepers’ in contact-ing potential participants on our behalf and/oradvertising our research and waiting for individualsto come forward and volunteer to take part.

Previously, when MB approached the women (ontheir doorsteps) who were to become participants inher study some claimed they had ‘nothing interesting

to say’ and doubted whether they would makeuseful participants. It is unlikely that any of thesewomen would have actively put themselves forwardas volunteers for the study if access and consentprocedures were as they are today. However, allwere happy to take part once they were reassuredthat their experiences were of interest and the valueof the study derived from the participation ofprecisely these unseen and unheard women.

By contrast, in her more recent study of childrenwith impaired vision and their families, MB and hercolleagues had to rely on ‘gatekeepers’ to approachpotential participants on their behalf. This way ofmaking contact with families protected their privacybut at the same time distorted the basis of informedconsent by linking the researchers with individualsand organisations with whom they had an existingrelationship. One woman, for example, wrote to theresearch team refusing to take part in the study,stating that she did not see why she should help theservice providers by taking part in the study whenthe service providers had so badly failed her child.In other cases, the use of gatekeepers appeared tomislead some individuals into believing that theirconfidentiality had been breached (when it had not)and potentially undermined their trust in theirservice providers. For example, MB received atelephone call from a man who was angry that hischild’s blindness had been divulged: it was badenough that she was blind, he said, but intolerablethat other people should know about it. As with theincreasingly instrumental attitude to research notedabove, these responses indicate a shift in the basison which individuals consent to participate inresearch and a greater confidence in refusing toparticipate at all.

RECs, whose responsibilities include protectingpotential participants from undue pressure orcoercion to take part in a study, have also playeda role in distorting recruitment, particularly byimposing tight restrictions on how participants maybe approached. This raises questions about whoeventually takes part in research studies and theirmotivations for doing so. For example, in hercurrent fatherhood research TM has found that therequirement that she advertise her study and waitfor potential participants to contact her has notonly protracted the recruitment period but has alsoled to the recruitment of a sample who are

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predominately white and middle class. As notedearlier, participants appear to be motivated by adesire to make sense of their own experiences and tobe attracted to the study as providing an opportu-nity to do so. One participant noted in an emailcommunication to TM following the final of threeinterviews that ‘y the interviews have been a little

like counselling. I think we can all do with a little

gentle counselling’. At the same time several havealso spoken of being ‘signed up’ for other researchstudies. This raises a concern that increasinglyprescriptive access routes and formalised consentrequirements will result in a smaller and highlyselective pool of willing potential research partici-pants—the ‘professionally researched’. Changes inconsent requirements then risk excluding othersbecause of suspicions associated with bureaucraticpractices, for example, signing official forms.

The requirement that individuals must ‘opt in’ toresearch also raises questions about agency, powerand ‘choice’. While all individuals have agency andcan at some level make ‘choices’ about participationin research or withdrawing once recruited, it isimportant to note that agency, power and reflexivityare always experienced and operationalised withinparticular structural and material circumstances(Adkins, 2002; Lash, 1994). Yet underpinning theconcept of informed consent is the problematicnotion of research participants as autonomous,informed and empowered, making rational choicesfor the benefit of the self (Corrigan, 2003). Althoughthis construction of participants as modernistsubjects has more recently been challenged itcontinues to be reproduced in relation to informedconsent practices, procedures and requirements(Alldred & Gillies, 2002; Reissman, 2005). Moresubtle aspects of the workings of power and ‘choice’can also be seen in the legitimacy and trust that bothMB and TM were accorded in their later studies onthe basis of institutional affiliations and associated‘expert’ trappings.

Yet, the increasingly regulated and bureaucraticaccess and consent procedures which have emergedas a response to managing wider societal change (forexample ‘stranger danger’) and concerns about‘risk’ and ‘safety’ cannot control what occurs inthe interview. Greater ethics regulation may affectthe type of sample we are now able to access, butstatic consent conventions cannot capture or con-tain what in qualitative research are often unpre-dictable interview encounters. Issues which arise ininterviews can be unforeseen and personally distres-

sing, for the participant and researcher alike. InMB’s study on visual impairment, some participantsbroke down in tears when talking about theirdealings with the medical profession or about theirchild’s future and expressed views which would notnormally be regarded as socially acceptable formothers to hold. Clearly, then, in exploratory,qualitative research where data are emergent,participants can sign a consent form and then findthey reveal much more in an interview than theyhad intended. One participant in TMs fatherhoodstudy commented when asked if he would like toadd anything further at the end of an interview ‘No,very thorough questions. You’ve got me from every

angle’. The intimation was that the interview hadbeen much more probing than he had expected (orconsented to). Similarly, in TM’s earlier study ofmotherhood, carried out when access routes andconsent were not so bureaucratically regulated,initial verbal consent to take part in three interviewsover 11 months was given enthusiastically by all thewomen. Yet at the time they could not know howtheir transition to motherhood would unfold andsubsequently one participant was reluctant to beinterviewed following the birth of her child. TM hadto consider whether persistence in contacting thisparticipant was potentially enabling for the partici-pant, who was depressed and lonely, or implicitlycoercive (Miller & Bell, 2002). These researchexperiences raise questions not only about theappropriateness of current conceptualisations ofconsent but also at what point in the researchprocess informed consent should be requested(Mattingly, 2005).

Balancing the requirements of informed consent:

moving forward

A feature of our research experiences over the 35years has been the increase in the number of issueswe must now consider in relation to informedconsent (Wiles, Heath, Crow, & Charles, 2005,p. 11). This leads us to call for a more sociologicallyinformed approach to informed consent which takesaccount of its socially constructed, changing andmulti-layered nature. The issues explored in thispaper have at their core the misfit between complexand fluid social worlds and increasingly standar-dised and regulated ethics procedures. So, whileinformed consent is often conceptualised as a one-off act—and gaining written consent can be justthat—in practice it includes weighing up risk,

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privacy and protection, safety and potential harm,trust and responsibility and demonstrating thatthis has been done in a systematic and auditablemanner. Transformations leading to increasinglyfluid and contingent societies have changed thecontext and climate in which many of us nowpractice qualitative research and these necessitateawareness of the issues discussed above. Forexample, being a woman, with a ‘natural’ interestin women’s lives as mothers, is no longer anadequate basis for establishing trust as it waswhen MB began her first study in the 1970s.But the rapidly increasing bureaucratisation ofethics requirements around informed consent is indanger of inculcating a false sense of securitywhile failing to acknowledge the need to dealwith individual qualitative interviews in their ownterms. In an increasingly uncertain world there aredangers inherent in assuming ethical homogeneityand adopting ‘ethical universalism’ (Reissman,2005, p. 487), or in believing that these are eitherdesirable or achievable (Hoeyer, Dahlager, &Lynoe, 2005).

We now carry out research in social contexts inwhich experiences of agency, power and risk allshape the qualitative research encounter in wayswhich cannot be anticipated by or encapsulated ininformation sheets or signed consent forms. Thetechnological, communication and legislativechanges which have characterised the period underreview have also contributed to the reconfiguring ofthe research relationship. But changes in commu-nication technologies, for example email, can offerresearchers new opportunities to document theprocess of consent—the invitation, the responsefrom the participant, the questions asked andanswers given, the negotiation of dates and timesof interviews, and so on. This is potentially a muchmore appropriate and useful way of workingtowards (and documenting) participation in re-search which is both informed and voluntary thanasking participants to sign a consent form at thestart of a study.

A more sociologically informed approach toinformed consent might also require a more expliciteffort on the part of both researchers and RECs toestablish the grounds for a relationship of trustamong all the parties to research (O’Neill, 2004).This would entail the engagement of researchers,participants and ethics committees from the outsetof the study to develop mutual understanding and areal commitment both to the welfare of individuals

(and communities or populations) and to theadvancement of knowledge. This more democraticand transparent approach to ethics and informedconsent might involve the setting up of actual orvirtual (email/web-based) support forums acrossinstitutions/other bodies in which ethical issues ingeneral and those arising in relation to informedconsent in particular are discussed and practicalsupport and previous experiences shared through-out the life of a research project. This would requirea shift from the static audit and accountabilitymodel which currently characterises many ethicscommittees to a democratic, process-sensitive, sup-port forum. In a truly democratic forum, researchparticipants might also be involved in some way,provided that anonymity of all parties could beensured.

Clearly then while researchers need to develop anethical literacy as part of their training anddemonstrate ethical sensitivity in the conduct oftheir research, there needs to be a correspondingtrust on the part of ethics committees in researchers’abilities to make decisions ‘in the field’ and as theyarise. This is not to suggest a return to a guidelines-only approach to informed consent and ethicalissues, but rather to call for better education formembers of ethics committees and researchers alikeas to the nature of qualitative research and theethical frameworks within which particular re-searchers conduct their research and for greaterwillingness to engage with and address ethical issuesas they arise over the course of time.

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