WALKING THE TIGHTROPE: ETHICAL ISSUES FOR QUALITATIVE RESEARCHERS Edited by Will G, van den Hoonaard In recent years ‘undergo increasingly restrictive ethics testing. But are formal cn chien retearch congruent wih the ims and method science research projects have been required to ‘Through examination ofa numberof topics confiden settings, questions of ‘voice,’ and the complex nev chall research ~ the authors test he appropriateness of current \d students of WILL ¢, VAN DEN HOONAARD is. professor of sociology atthe University of New BrunswickED BY WILL C. VAN DEN HOONAARD, Walking the Tightrope: Ethical Issues for Qualitative Researchers RSITY OF TORONTO PRESS 10 Buffalo Londonly of Toronta Press Incorporated 2002 Bulfalo London ISBN 08020-36889 ISBN 0802085237 (pape e Printed on acid.ree paper National Library of Canada Cataloguing in Publication Main entry unde Ira'9s'0072 — c20n20015766 Unive {rom the Qu New Bru ‘To Michael G. Rochester ac end nepresenteContents ledgments ix JJ Norming and Qualitative Research, van den Hooaard 3 -ntions and Awkward Outcomes: Ethical Gatekeeping 3 Do University Lawyers and the Police Define Research Value? Patricia A. Adlerand Poor Adler 34 4 Challenging the System: Rethinking Ethics Review of Social Research in Britain's National Health Service ~ Melanie Pearce 43 6 Confidentiality and Anonymity: Promises and Practices = Linda Snyder 70 7 Biting the Hand That Feeds You, and Other Feminist Dilemmas in Fieldwork~ Merlinda Weinberg 79viii Contents 8 MyResearch Friend? My Friend the Researcher? My Friend, formed Consentand People with ties S. Anthony Thompson 95 9 Hazel the Dental Assistant and the Research Dilemma of (Re)presenting.a Life Story: The Clash of Narratives = Erin Mills 107 10 Breaking In: Compromises in Participatory Field Research within (Closed Institutions Mary Sratton 124 11 The Harmomy of Resistance: Qualitative Research and Ethical Practice in Social Work Michael Ungarand Gillian Nichol 137, 12 Pace of Technological Change: Battling Ethical Issues in ‘Qualitative Research ~ Barbara Theresa Warusynski 152 18 The Tri Council on Cyberspace: In and Extrapolations— Heather. Kitch 1s, Oversights, 160 ‘Some Concluding Thoughts Will. van den Hoomaard 175, References 189 Index 207 Acknowledgments Any tip towards a publication involves many passengers whose participa: 1e enterprise needs praise and accolades. Since 1990 I have been ng papers in, Ontario and "as they becam ty of qualitative research ‘paper there dealt with the problems of written ‘consent forms. The ideas of many of the sessions’ participants have lowed me to explore more fully the meaning of doing work ethically research agencies began 10 in. Hence am grateful to all ‘those participants who have contributed toa change of vision on my part. thank the contributors for their timely submi 1. L appreciate the discovery of new friends andx Acknowledgments _gencrously supported the conferences. More perso Dr Hugh Lauiard, my neighbour across the hall sort for my research and writing projects in general Will C van den Honan Fredericton, October 2001 Contributors Patricia A. Adler and Peter Adler received their PhDs in sociology from ity of California ~ San Diego. He is professor of sociology at lorado, which he chaired from 1987 to 1993. emphasis, recent book, Creating Fear: News and the Construction of Criss (forthcoming), looks as the news ‘media's constructions ofa discourse of fear and the social consequences of this,xii Contributors John M. Johnson received his PhD in sociolo nia San Diego in 1973. He is professor of ‘graduate studies at Arizona State Univers theory, philosophy, domestic violence, his eleven books, his fist was Doing Field Research (1975), and. recent,co-edited with Joseph Kotarba, is Postmodern Existentialism (2002) He is past president of the Society for the Study of Symbolic Interaction and was editor of the journal Symbolic Interaction. Florence Kellner received her PhD from Rutgers University in New Jer- sey. having done her graduate res of Alcohol Studies. She is professor of sociology and anthropology at Carleton University in Ottawa, Ontario, and is also a faculty me the Summer School of Alcohol Studies at Rutgers University. published in such journalsas the Canadian Journal of Sociology, the Canadian and drugrelated is ‘currently serves on Carleton University’s Fics Review Board. ‘current research includes examining 2v in provincial correctional institutions in Canada and phenomenological analyses of residents’ adoption of and/or resistance to such programs. Erin Millsis a doctoral student in the Department of Sociology at University in Ottawa, Ontario. Her research ‘work and qualitative research methods, partic and life hist ers, and patients experience dental work completing her studies, she worked asa dental Nichol has over twenty years of private-sector experien: (centred and employeedriven programs of organizati She received her BSeand MSW from the University of Toronto, where she Contributors xiii the role of social work in organizational change, and health-sector systems of accredi [cis professor of as two Major areas of scholarship ~ ct 1e wrote Community Consultation (1982) with Ealison J. Trickett, and ethical decision making, as represented by Negotiating Consent in Psychotherapy (1998). He has been a member of the Committee on Ethics of the Canadian Psychological Asso- Jince 1988 and served on the Academic Freedom and Tenure tee of the Canadian Association of University Teachers for nine years, including three years as chair Melanie Pearce is a postgraduate research student in the Institute for the University of Nottingham ‘due to complete her PhD practising counsellor Linda Snyder has a PhD from ‘or of social work at Renison -arch interests include community diversity and its implications lerican comparative stud- ‘of addressing poverty in Canada and Chile, She has pul Social Work Reviewand has.a chapter in Anne Westhues's forthcoming edi- tion of Socal Potig in Canada,xiv Contributors Alberta. Her interest community develo system, and the knowledge. Her collabo in Interchange and a chapter in a book (currently under review) of case studies on informal learning. 'S. Anthony Thompson ies in the Faculty of Edu in Vancouver. He tr cultural theory. Now he is ke theory, curriculum theory and people with developmental, matic clash berween ‘special education’ and soci pins most of his current work. He has published in the International Journal ‘of Disability, Development and Education (an article written with Mary Bryson and Suzanne deCastell), and JASH (Journal ofthe Association for Persons with ‘Sowere Handicap). 1! work have focused on re sxe management and treatm individuals. He has written and spoken on resilience, high-risk youths and families, and non-pathologizing models of intervention in Family therapy, contributing to Adoleence, Child and Youth Care Forum, 1e Journal of Strategic Therapies. He is also a member of the Child League of Canada’s National Consultation Centre and provides I support to corrections and providers of mental health care Uroughout the Maritimes. Will C. van den Hoonaard received his PhD from the University of “Manchester in England, He is professor of sociology at the University of inning for Resouras for Feminist Research, Contributors xvWALKING THE TIGHTROPE: ETHICAL ISSUES FOR QUALITATIVE RESEARCHERSIntroduction: Ethical Norming and Qualitative Research WILL C. VAN DEN HOONAARD, for hampers the thrust and purpose of their research because cur ethical research standards are designed in terms of issues relevan procedures on prisoners or forensic mn with drugs, whether LSD, DepoProvera, ‘or drugs near market entry ‘When the latent effects of these experiments became manifest often wer ~and wi sbsequent rise of lawsEthical Norming and Qualitative Research 5 tive researchers.’ The inevita: versity lawyers and the police in reviewing research 1 process becomes one about prote in many other Western countries established similar legal enforcement, formal ethics review took on a legitimacy that has spread across the worl, able, Johnson and Alheide propose five realms — ‘cual, professional, and corporate ethies. es and research-granting bodies, without con: ing natural science even closer to us than it has licy came into effect.” The ‘gold standard’ for indness to the bbeen before the new cthics review might in fact be tainted because of its qualitative researc word ‘subject favoured cts It refers to rescarch by research ethics inds more resonance among boards (REBs) because they are vulnerable and are ust ‘organization of research Patricia A. Adler and Peter Adler (chapter 3) write about tendled consequences of institutional review boards (IRBs) in the United ‘States, whose original aim was to protect human subjects, but that nowsdgment of their work in terms of medical and naturalscience research is inappropriate and disturbing. tion of papers that not only more the problem- ied papers are Conferences (the ves), held in May 1999 and May 2000, and the Annual Meetings of the Pacific Sociological Association, in March 2000. ‘The former two gatherings took place in Fredericton 3 nas University, respectively, and - qualitative researchers have been bring- ‘several more papers, The eager: these researchers to explain their frustrations with REBs, as ‘enthusiasm (0 set research, convinced me t a maternity home the career of a dental assis tive academic conference tings, however, are but research and to the very reflects the present-day d nig quaitat ize that both external given conferen allowing for ethical reflec- of scholars, Having prove the long perspect ions, they ean afford to take a ¢8 c. van den Hoonaard his research on a radical Some, like Murray Comarow nabrights group (Comarow, 1993: As 1993), a lawyer and former federal official in the United States, suggest that sociologists ought to be prepared to spen in prison if they wish to follow through on their promises of anonymity to thei of their research data when faced with subpoenas or court orders hardly an inducemen to conduct field research ‘There has so far been only one such case in Canada. A cout asked a graduate student, Russel Ogden, in criminology at Si cases of people ited Kingdom to store q secondary analysis (MacDonald, iad to agree to have my data ~ lable for review for ten years. I had great difficulty with thi terviewing a vulnerable group and have taken great pains to e express. an ethical aware ness oftheir work, ra ing Mary Poppins's often-cited quote about Ethical Norming and Qualitative Research 9 obligations carry the most weight? The answer is not easy. A research projects the fulerum of the interests of many ‘participants,’ from (in her ‘ease) members of REBs, through admini agers lors of a maternity home, to in cyberspace. Barbara Warusrynski ras of a specific research desi Jet do we face when we el participants on the internet? researcher must face. Heather A. treat the texts in eybersp: from such sources as magazi has become a proble (0 other are de- consent of10 Will C.van den Hoonaard resources to ‘applied’ research to solve problems, the legal emphasis on signed consent undermines the stuely of these problems. "The use of signed consent forms is one of the most highly contested areas for qualitative researchers. iston use ‘of the signed form of consent in about the ‘gate the problematic nature of signed informed eonsent in research, ‘An insistence on using such forms may \etimes destroy natural ‘would have been possible in the past to retain the nnonymity of those being interviewed, necessary to acquire a name and signature. One can imagine many instances where the insistence on signed consent may be unwise or tactless. Using consent ilexperimentation. Such ex the placement of "surface elect = but not the desired ‘ethnographic in those inter- ig signed consent ‘may prevent some individuals from participating in research. A col Ethical Norming and Qualitative Research 11 league ofa researcher in one o to take part ina research project, could not do so because she refused 10 sign such a form (Anonymous A, 2000). A nurse and sociologist who is interviewing peopl Inake whether Esign second thot 2° Thinking he might be «about my being therefor the study, I reminded him he could ask me to leave his home i he didn’ u don’t understand my question, he replies. ently here this the need home. hen she was doing part human subjects who did n a group th: consent to the research,12. Will C. van den Hoonaard ‘with a confusing firs five minutes and the interviewees would say, ‘what- ‘ever, whenever she would explain why she had all of these forms. The searcher concluded that the ‘consent forms were obtrusive snonymous ‘become particularly problematic in research on. show ingenuity. Gracy Exaggevating Harm and Risk REBs can overstate risks, after one gives a an ethicsreview applica- dof the questions are text of qualitative research but are hardly recognized as such by REBs, ‘The Internal Context je research may adopt a different position. Qu: find REBs' insistence on knowing the exact questions being and direction of ser the first day or two of views and observa1M Will. van den Hoonaard stages becon 1e course of the res other areas, ‘open up for study. Scientists who are used to statin and pructising deductive reasoning may be app: proach. Nevertheless, ethnographic research has yielded significant Insights, because ofits open, inductive approach, Hoterogensity (and Vulnerability) ofthe Researchet Population researcher needs to be open to the fact that a setting may have a sogeneity of research par template. In her study of the sex rade, urges the recognition of such heterogeneity. Even Ay, the health and safety culture ~ her method. ‘each group, requiring sensitivity on the part of the researc! S. Anthony Thompson, a reputation for working with people with development: ties and writes from that experience in chapter 8. The ethical dimen- research do not conform to the expectations of normative ' review, Such populations are ‘vulnerable’ (although in some ‘eases such a judgment cannot stand the test of reality), but sometimes research does not fulfil participants’ expectations of friendship, and they share * researcher. The waters get tariness' and institutionalization, Voice sand the cot 4 notes in her study become ‘blurred! (Pollack, 1999). P prisons that the ‘notion of the self as a research influence is an nportant aspect of qualitative research that deserves further explora- issues of research centre around ‘the responsi- is subjects when one disturbs the Jy, social researc igated nature of deductive approaches, because itive researchers amplify their own research participants. Qualitative researc in recording their voice rather than that of Ethical Norming and Qualitative Research 15, cers are increasingly recognizing the struggle between the autobiography of the researcher and the bi Michael Ungar and Gi among qualitative researchers about which members of some REBs are ps replace the honest to reproduce, Mary Stratton (cl patory action research (PAR) everyone in social action and so ter 10) echoes the experiences of noble idea of eng is no reason “to abandon any attempt 10 research voice.’ Who will break 1 to “release the voices of the cap- qualitative researchers? the essays constitute an expression of the two processes that bot haunt and edify qualitative researchers: the often. tion of codes of ethics designed for other types search for a higher level of ethical sensitivity by Gnashing teeth and grasping the to do at the same time, However, this volume has, [ believe, a number of strenj casts the ethical parameters of qualitative research in a larger, theoretical perspective. Second, each author brings to bear his or her experience in the volume offers a practi 1g decisions abou give su barriers ‘The cont Canada, and the and offer a more ‘edge’ view of ethics in field research than issearch libraries, course insructor, and, in particular, dhe many students and members of fa o must, through thesis and grant proposals, iplore REBs to reconsider the needs of qualitative researchers. wite the reader to consult the concluding chapter if he or interested in knowing how REBs ean consider proposals for qual research more faitly Notes 5 "Gonsent Form — Digital Myocectric Controls Sd” provided tthe author he Euhics Review Committee of the University of New Brunswick, 30 Octo- er 1988, 1 Good Intentions and Awkward Outcomes: Ethical Gatekeeping in Field Research PATRICK O'NEILL. Researchersin the biologi This essay focuses on research in soci number of related issues that, taken together, Ethics rules, such as thos Ethical Conduct for Research Involving Hume ye Tri Council Policy Statement: (MRC, NSERC, and SSHRC,18. Patrick O'Neill 1998) requi vance what may hay we given informed consent "ralso has to know the research question in a in order to provide full disclosure to a research ethics board (REB) ‘order to get approval before st ust know the risks involved in participa- iarantee of confidentiality will be challenged egal system, and a researcher may be req vas supposed to be confidential. To infor participate. TI ley could not predict in advance: jons, fears, and conduct parents might talk about ~ pot if material that might be reportable to some social agency. The Santé Québec (Quebec's Health Department) said team must warn parents that the researchers had res reason to believe that the security or development ata what might be covered the researchers: wher they could hardly explain some The researchers be- that many parents - After months of could stration. Richard Leo did participant-observation igation Division of an urban police department. ice questioning of suspects, and the police al public defender was able to set was found not guilty of three jde of persons with AIDS, He attempted to gather anonymous ronymnity broke down he guaranteed absolute confidential assisted suicide is against the law. After he had completed his and decided that one case was probably a ‘person un- ‘whose identity he had been trying to establish for more than a year. The coroner subpoenaed Ogden and his records. Ogden destroyed. ny records that would identify participants and refused to break conti- Ata contempt hearing, he managed to convince the coroner that he should be permitted to withhold the information. In the after20 Patrick O'Neill math of the ease, however, the university's ethics committee prohibited 1er research in which any researcher proposed to guarantee ab- ‘This decision seriously delayed proposals from so- and psychologists who needed to gu confidentiality to study delicate topics ranging from assisted. drug use to underage sex trade work researchers did not know wi pants, and a sweeping dela So many nervous parents fro ly ‘would not be valid, Leo at Berkeley did not know that he would be s poenaed, and he could not anticipate that the university would ri port him, As well, he did not know that his research notes would affect a trial outcome, Ogden could not predict that publicity about det ‘one of his cases woul ‘coroner or that he would be able to talk his way out of a contempt ci Possible Solutions as challenges for The jon that prevents proper study of some social problem unless there can bea guarantee of complete confidential ity, In qualitative research, methods usually do not lend themselves to collection of anonymous data. Researchers must rely on making prom- ises of confidentiality, but REBs may pre-empt the research by not gr ing approval, If they do grant approval, legal requirements may put pressure on the researcher to surrender confidentiality For Researchers: The Wigmore Criteria Good Intentions and Awkward Outcomes 21 Imay enable a researcher to maintain confidentiality in the sort of situa- tion that I have been deseribing * bedrock citron Ir sounds spl, but, te matrs for tne researcher ad the ive topics. Note that a thief: hich leads ionship must be one t correct disposal of th headaches, They tbe pont damage done othe relationship betwen researchers at helt the Wigmore criteria have been used 0 h some (rare) exceptions, class priv lege, and their jents have a rig sure rues. Instead, eases are judged on d List who refuse22 Patrick O'Neill, hhas to show that the criteria should apply to the pa ‘An excellent study of the application of the Wigmore criteria in Canada has been done by two law professors, Michael Jackson and Marilyn ‘MacCrimmon (1999). In their opinion, ected, (6) lationship between th (REB). The researcher goes to the REB with a proposal inquiry intoasensitive topic. The board ipants informed consent. The researcher may dtempt to keep sources anonymous, but the identity of the source may ll become known to the researcher anyvsay. Atensuring anonymity, the researcher will have to deal with confident ity. The researcher's plan is to guarantee confidk searcher uillhave to disclose informatio requires) that the researcher expl {snot unconditional that there may be circumstances provided by the participant (or perhaps the part aftermath of the ify that informa. ted by law «. he researcher may . invalidates the rest of the legal argu ‘The REB may ask the researcher, “Well, subpoenaed and required by law to disclose ate that gives advance immunity fi such certification, the researcher can24 Patrick O'Neill ‘work was tise, Here is the Jackson-MacCrimmon (1999) form: “The researchers will do everything possible to maintain the confideni ality of information obtained during this study and the anonymity ofits sources. fan order is made by a court that the researchers Imation or reveal the identity of their sources, the university will provide legal representation until all available court processes have been exhausted to assist the researchers to maintain confidentiality of i mand scveal any confide! i ethically proper, consid- |jugate ethics to the aw. With appropriate subst protect even the confidentiality of the priest-pen practi ificance is that it commits the university, which has deeper pockets than the researchers or the REB, to pursue defence of 1e way to the Supreme Court of Canada if necessar It may be a challenge to geta university to make such a eo! demic freedom. Unless ‘ment, researchers who study sen ‘work, If such researchers are to have meaningful academic freedom, hhave to protect them when the chips are down. \e courts, by the way, tend to agree. In the Ogden case, the adminis. Fraser University led to support the researcher financial the thesis topic was assisted suicide, the admi argued that to provide funds for a legal defence might make it ser the university condoned or favoured euthanasia. After he won the cas ie researcher steed the university for legal fees that he had incurred, his judgment, Provincial Court Judge Steinberg commented: “The p pies of academic freedom and privilege are fundamental to the opt ‘of any accredited university. There is no questi today's society, Research such vague statements of personal support as expressed by re university .. and the Dean of Graduate Studies .. sou d when compared with the opportunity they had as leaders of the Good Intentions and Awkward Outcomes 25 unre to promote the demonsated vale of academic freedom and academic privilege as evidence: case’ (Ogden u Simon Fraser U ‘ity, 1998) ‘Judge Steinberg condlemned the university for what prising lack of courage.’ When the judge's harsh co versity administration paid the researche ther delay and then agreed to support called ‘a sur- were publi legal costs2 Yet Another Coming Crisis? Coping with Guidelines from the Tri-Council FLORENCE KELLNER ‘This essay addresses continuing, pends on the field asa primary source of d if we are careful and thoughtful about ‘certain that ethics codes Natural Sciences and Eng Social Sciences and Hi the Tri-Couneil Poliey Stateme! makes it (orcontinued which indicates that proposals wi oper procedures are ofthe work, after is been reviewed. The cur28 Florence Kellner cerably in writing instances, signed rel data-gathering (article 2.1 ‘capacitated people are research subjects, third parties or guardians may he sections on privacy and te the measures used to safe used to safeguard the data intended use of the data for ple of distributive justice, i should be equitable. No sector ofthe popur jonately burdened with the costs of the re from study (articles 5.1 and 5.2). For all these principles, there are dis- portance of academic freedom and n about the range ‘of social isues important to qualitative researchers: often the best know ‘edge about alcohol and drug abuse, selFimage, divoree, voting prefer- \ce, and so on, comes from asking people about these he TréCouneit Policy Statement desc REBs, which every acade have in place (art rel board refuse to approve an appl say go to an appeal board, established peals (article Coping with Guidelines from the Tri-Council 29 ‘The policy states that some research on humans is exempt from ethics review. Research involving minimal risk to participants need not be re- viewed, and publicly 2 Report from the Centre on Governance Beween 1999 and April 2000, the Centre on Governance at the envisage the TC standard” for research not only within ernment, non-profit groups and the private sector, But this objective (Centre ireand diseussion of possi- lels comprise much of the substance of ced interviewing,30. Florence Kellner The report identifies attributes that respondents recommended for application of the Tri 2 transparency, room for learning individual researchers and their project proposals. Both the policy and learning ~ once a person becomes fa the process of review, conformity and perhaps courages fragmentation and unevennessin the application of ethics’ ‘How expert are the REBs? Do they have the appropriate research and ethical expertise?" “What premise do we hold of researchers and ins "7 Do wwe really believe that chey are all just trying to get around the rules?" (Centre on Governance, 2000: 50-2) Diseussion the sen: involves a caring for the Other and an attending to the welfare and the needs of the Other. The requirement to care knows no bounds in scope ng with Guidelines from the TriCouncil 3] fone is never through with sof privacy and with robably needed now is this se, iteup have more to d hhave more to do with an orientation to the Other. Codes of ethics, or any codes, do these very human aspeets into account82. Florence Kellner and doing the right thing with them, ited 1m to the welfare of these more important aspects of our conduct in ‘ethical requirements and moral requirements conti take priority. Practical Considerations the ethics code. For example, there are sections that exe! 1s of naturalistic observation. There is also hich respondents may be pi judgment, where there isany doubt, or where an investi reviewers would have doubt about whether ‘this clearance, it should be submitted with some staten position in a grey area regarding the necessity for review. bably the big difference in the Tri-Council Policy Statement is its re- {quirement that studies ~ funded or not funded ~ using human subjects ow by ice study identified a two-pronged lack of trust in the ap- gover m process. Researchers did not trust adjudicators to judge su Coping with Guidelines from the Tr-Council 33, sions fairly and responsibly; administrators of the code had the impres- sion that researchers were cavalier and not as responsible as they should ing their subjects. tionship. Please sce Parsons3 Do University Lawyers and the Police Define Research Values? PATRICIA A. ADLER AND PETER ADLER Significant changes during the later twentieth century have profoundly affected the conduct of social scientific research, tional review boards ( came to regulate schol simultaneously greater and lesser goals, as we argue below. “The directives and judgments of these boards have evolved, becoming igh they prese ed else baneoai gE ied — to pass through its approval process. To force people to comply, they have the power to ‘withhold students’ degrees and to revoke the tenure of faculty members, [An Orwellian atmosphere of surveillance and compliance has emerged. ‘The experi ty with our field, ‘on our own exper mentored and tal Do University Lawyers and the Police Define Research Values? 35 ethnography sequence (gathering and analysis of data) that has igs OF these hoards clos students’ projects through. ‘We have noticed t ted research practices and in sta tee members deny this. Research ps conversing with our children and their friends, We could then use this everyday-ife knowledge as data for research, Our students were t if they gathered data through a membership role, used to be acceptable with consent way, shape, or form. We put fort Some projects are now just impossible, as the following five stories show. In the mid-1990s Patti had a student who took an extended leave of aly36 Patricia A. Adler and Peter Adler sence from graduate school because his ini clear his project, joughts and feelings. They were \ey were at friends’ houses or the grocery store or olfering Some safe ‘cover’ story. Obtaining parental consent would have harmed these youths. 1e IRB next rejected his role in the setting asa co ig the you ‘oF case examples of the non-consenters idea. He still had to leave the 1g: There was no way he could do this project under the IRB regula: ons. He left the university in frustration. ted diseases planned. iad been diagnosed with one. or, she had led support groups tuddent who was studying sexual ea support group for women wh ‘astrong background asa peer edi Do University Lawyers and the Police Define Research Values? 37 for women with eating disorders and thou is good way to gather data while helping women. The univ ‘was highly supportive and offered to refer ‘but the IRB placed to0 ‘would lose her permission ro study the whole group. The TRB that she would have to run another group, a non-research gro offer that to people. But she was unable to recruit enough individuals for arrest policies began to be enforced. The poli see which party was more badly beaten, and ar treatment groups for violence prevention, Al iad histories of chronic battering, and most had fo violence as a way of protecting themselves, argued. She was thus required to inform women prior to the interview that if she observed or heard of any violence she had to report it 10 the authorities. She had to go into the research telling these women that she88 Patricia A. Adler and Peter Adler could not hold what they said in confidence and that she would be forced. ing were charged to suppress a Black subject. He was subpoenaed to testify against his sub- Jjects, yet he felt an ethical imperative to hold their confidentiality and o keep Others and we have written 1e practice of self-censorsh because sociologists use discretion about wl sing excessive violence is groups when an sated” (see Scarce, 1994). Both men were ‘graduate students whom the police approached to subpoena their field notes, and both resisted, Scarce went to jail for almost six months. The [ASA backed his stance, But now the ASA would not support him. Its new ‘ethics code is that the law ofthe land isthe ethies code of the ASA. Is that right? Do we have a moral obl The new code i plying for a further protect their subjects) to see ifthese lawyers would port them, Publishers are taking the same precautions, and our U.S. publisher asked us after we wrote our last book if we had collected the appropriate informed consent forms. The editorial board Do University Lawyers and the Police Define Research Values? 39 at what price? We, the researchers, are to prot subjects from o selves, We are to protect them from ig that we eannot hold safe, because we are 1g safe, We are to-answer the que side with the underdog. But the new regulations drive a wedge between ‘our subjects and ourselves by requiring us to become the 'stolies’ of kaw ‘enforcement. What types of research are hardest hit by the new ch code? Firs, illegal activity has become extremely di sang a we ge peop omic sn he ach mapped that we get from the government in shielding our subjects expo them and us to danger. We rs40 Patricia A, Adler and Peter Adler ‘groups can deny research access by refus all aspects of, investigative and covert research have been banned. Many classic pieces ‘of research, including Humphreys's (1970) Tearoom Trade and Wheeling be done today. Like the out- groups can now better hide ¥ control, while weak and powerless groups have lost the abi their stories from their own perspective. Is ethnographic research hit the hardest by these code? There are five reasons why we believe this to be the and how research begins. To pus ned consent when people have not determined if particular is viable, if they can Forge a role in it, and if they can generate relationships with setting members may be premature, damage relationships and status, and doom the ‘wait t00 long leaves previously interviews with the managementand did ‘cha with employees as we wandered around the property, chatting with peo- they were at work, We had maybe five minutes to strike up a wersation with these strangers and ask them such questions as, ‘What department do you work in? Do people from your department stay jobs? Are they mostly transient or stable? What is your living situation ~ do you live with your Do University Lawyers and the Police Define Research Values? 41 nuclear or extended family? And then we had to move on, before their supervisors looked over and they thought that they had better return to work or they could be in trouble. We could sper wwe talked to few times we tried they asked us, we told them, ragraphers have a perimental researchers anti ‘As Van Maanen found out, his subjects behaved in ways that -opardy and made protecting them diffi done had the beating that they administered to their recalcitrant subject led to his death? Or, new issues may arise during the course of research pated, leading researchers into sensitive and prob- snographers are more often learners in good graces of their subjects. As Murray Wax (1983) ni alienating, Fifth, ethnographers cannot use anony is often harder to offer confidenti nities of their subjects, although they tr, becaus hey study are small and personal, Members of such42. Paicia A. Adler and Peter Adler consent forms as barriers? What are we really being driven by here ~ an jghts of people or an unethical imperae be trust and professional ethics, not further prot No matter how much ethnographic research is regulated, no matter ms, unanticipated situations will always arise that ‘whom they st 4 Challenging the System: Rethinking Ethics Review of Social Research in Britain’s National Health Service MELANIE PEARCE nnot disagree that the maintenance oi importance, when the review process becomes a hindrance to research, then problems exist that need revision, imental studies make up the bulk of their apy paradigm continues to predominate, For ‘number of social researchers undertaking research under NHS auspices, this poses somet ng of problem: can they and should they frame theirAA Melanie Pearce view of LRECs, Imove on to present ‘my proposal for review and of the are necessary to provide effective research. Local Research Ethies Committee (LRECs) In the early 1960s the birth of babies seriously damaged by thalidomide resulted in a statement in the annual report for 1962-8 of the United Kingdom Medical Research Council about "Respor subjects’ (quoted in Evans and Evar Medi Royal College of Physi proposals which involve human ). This oversight was t0 cover both ‘therapeutic’ research, of direct benefit tothe participant, and ‘non- ‘of direct benefit but contributes committees might cover one or ly include some university mem- ‘a non-aniversity hospital this exper- bers with research experience, but Rethinking Ethics Review 45 tise may be absent. This may si wel of committee experience. tives of Research Ethies Commit practice in research, to protect subjects of resear serve the subjects’ rights and to provide reassurance to the pul sion of adequate procedures and information to en: ation, the preservation of co ied supervisi and consideration, Safety procedures performed for the benefit hinder or impede ‘good medical research ... without good46 Melanie Pearce nce of some qualitative researchers may at times appear to 1995) may raise a valid question My Story T now turn 10 a description of the difficulties that I faced in steering a {qualitative proposal through the LREC application system. The process ‘was to take five months from initial submission to confirmation of ap- proval, and at times it was very frustrating. This is not intended as criti cism of the general hospital's LREC. There are many pres ‘They are seen as prot but rather as reflecting the problems facing a Tocal com its way under challenging circumstances. The dilemmas raised are not research, but about elements of an overall system of research. review that would benefit from discussion. ‘The objective of my research was to pr ing for a common the co-operation of the genetic counselling department local general hospital. The work was to form the basis of my PhD thesis ‘but was also responding to a specific request from a clinical team for a igs on what has been w satisfied they are, and the impact of the counselling. To. ‘compare clients’ perceptions with those of the counsellors, | planned Rethinking Ethics Review 47 about what occurs within actual genetic co Marteau, 1996). Asa consequence, ther ‘The major innovation of my research {ations and perceptions of the participants with the actual fe interaction. As wel as filling the acknowledged gap in research on the ropriate modification perce nd expectati smatch benween counsellors’ and cli ering data on the impact of genetic counselling on psychosocial aspects such as mood and emotion. All these areas will have relevance for tain ing and the provision of an effective service. ‘The combination of methods wil also allow me discuss jew is reflected appr ae48. Melanie Pearce th -arch begins ~ for example, the me: sd. As ‘knowledge’ is only that which can be externally jectively observed, and intern: dominant ap- I research, and many ofthe review procedures are prolonged procedure. Al iness or attending conferencesaccounts for perhaps ing period of about four months during a research period. I used up a further two weeks prior to submission com- Review 49 Tobie 4.1 Ethics application: Timetable of events Wook Date Acton 9 dune 2000 The process begins wih my requestng the aplation frm fam 4 Endotuuy 21 Aug, 11 Set 2Sept 00, 11 Now 15Now pleting a complex application form. This total represents a substantial ‘chunk of my three-year PRD schedul ‘which I have lost potent only for me of the commi reach stage, whatever work [prepared needed to be checked by my supervisors atthe university and, if twas information to go out to cients, by the genetic counsellors, I did not have to seek the approval of the latter, butt seemed desirable, in interests of good practice and co-operation. In addition, the structure of50. Melanie Pearce ‘more challengin the specific areas in which diffi asa result, there may be impediments to the resear Aves of Dificty st area of difficulty that I encountered lay i 1e 0 the predominance in medical research ofc snd many of the sections are irrelevant fora q sarch such as my own, These sections do not n ey do need to be worked through and understood to and they do make the forms appear daunting. As Lwas ‘unfamiliar with some of the hospital terms and departmental systems, some other necessary sections were also difficult to complete. “There were also a number of sections on finance for which Lad to go define my research with the precision required by some ceria, Terms such as hypothesis, rationale, investigator, and sci: cenfic background are more typical of an experimental model than of a {qualitative one, and I found myself confused as to what information was required and about where or how to arrange my information to fit. It ‘would have required less work to structure my proposal using the more of research qui research ques- fe to the practi Rethinking Fthies Review 51 in. The most significant difficulty of this however, lay in the modifications or amendments re- oposal. These were to lengthen the process the yemes for the interviews, Burgess Jong a continuum from structured interviews ierviewsas-conversation.’ He defined a struc- (102). The informal or semistructured interview itself is conducted along a continuum from mostly pre-set questions to totally unplanned time, and I had decided that its greater flexibility made it more appropriate for my needs. Thad anticipated constructing an interview guide of the type described by Maykut and More! mnselling should gu ings concealed and prompt further questions, research, and theory. The same process might, it program comes in, the themes to be partially dictated not only by the indi- ng from the data asa whole, 10 produce a precisely defined set of research proposal ~ a factor that was to cause will ake place in their homes ‘They are expected to be be- ‘wecen 30 and sixty minutes in length. Themes for discussion will include the expectations, needs and wants that the clients have of their counsel- ling session in terms of content, information, advice and any other areas the client might introduce, and their understanding of what genetic coun-52 Melanie Pearce ing and wanting in ter ‘As the research created, om a separate shes the following: ‘What do you expect is going to happen when the ger do you expect will he talked about?” ‘What ki to be discussed?" I also included a brief description of the ture of informal or semi-structured interviews to allow myself some tude to include other areas. “This version was accept and approval was given, However, the preci- changing the con: the recommendations ofthe Royal College of Physici also believe that this precision exceeds the scope of the LREC's r This is methadological material, not ethical, and (0 a level of detail not realistically compatible with my research ethos. Amendments with Implications for Progress of Research specific in detail and may harm the research; as I show bel slowed the progressand affected morale Theamendents elated monly to patients’ information and consent. Informed cons isa vital part of the LREC’s recommendations. When and the Royal College's recommendations or commi ing the voluntary nature of participation, with clear indicat pants thatno difference to treatment will ensue from ref Rethinking Ethics Review 53 hhas assembled its own page letter covering most of the above recommen hhad omitted a specific statement on the study’ easy to read intial appoint she were willing to take part. Both documents had been checked, commented on, and altered, where it felt necessary, by the gene ‘The first amendments made the important point that I must state that the study is of no direct benefit to patients. They also requested that I including all the sections ex- and writing und than | origin \e formality ofthe presentation and/or put them off by the excessive amount went to the study. Ie letter also asked for provision of counsellor forms, Although itincluded an apology for not having mentioned these before, itstill necessitated more work. As the counsellors had been consulted and involved from the st formation sheet, at least, seemed unnecessary. It might also caus54 Melanie Pearce also challenge the views of those who in particular patients’ needs. Similarly, fe the general hospital's work as individually liable for icant questions do merit general discussion. All the areas mentioned above lengthen the application process. The long gaps between sending of material and response, the production of two sets of amendments, and the amount of work and detail required in a fivemonth procedure. If attention had focused on pi ‘one set of amendments would have been necessary, 1d put back the potential start of my ‘and Economicand Social \d deadlines for research but one, imagine, not unique to me. The long periods of waiting, the disappointment at a second set of amendments, and the feeling of wast- ing time when useful activity became limited option all contributed to profitable or de although I recog research altogether, may prevent some kinds of potenti student projects (Jenkins, 1995), and dissipates resources. ial research, should there be a separate system and/ ‘Asmy experience has shown, the difficulty offing pile, on the protection of patients from ph different information. Patients may need, for example, more details on56 Melanie Pearce though in my case sneered mathod rat fer certainty about what co\ in sociological snd should perhaps restrict that area. Again this relates to the lack of existing gui research, The report quoted above seeks clarification of ‘the roles and, 1 of the different bodies involved in research and its man: and again emphasizes external peer 1at most funding bodies will have carried review by experts. It points out ‘out rigorous checking before picking” (Alberti, 2000) changes? ‘overwhelming bureaucratic obstr i different levels of research activity need to be subjected to a greater or lesser degree of control’ (Anonymous E, 2000: 21), This might include Rethinking Ethics Review 57 more limited review — or even the delegation of review ~ of projects al- ready pasted as methodologically and legally sound by other expert so- cial research bodies. Conclusion tal to the research process. There view that is needed and the system in place to supply it As the amount of easing there is a definite need for are required, ial changes announced Iargescale studies _ 1 alongside these -sand procedures that under- jew of social medical research in the NHS might be ns. Ia university fails to meet the nay be precluded from holding period. As these studentships are58 Melanie Pearce Schedule are therefore too critical o ignore, 5 Reflections on Professional Ethics JOHN M. JOHNSON AND DAVID L, ALTHEIDE Professional and research ethics among social scientists have gained more , Public universities, and profes- ice the nature and process of re- iquiry. The experiments on human subjects ‘government and injuring. ‘ion and plutonium medi- admitted responsibi hundreds of private citizens in a series of rad cal experiments. In this essay we explore some of the complexities of professional eth~ ‘our combined sixty-five years of professional practice as university-based researchers and scholars Overview ‘The last two decades has seen an inerease in control and regul: snces. This was arguably by the horrors of the Nazi experimentation on human subje the Second World War, and perhaps by knowledge of the U.S. experi-60 John M, Johnson and David L. Altheide ‘ments on Black men with syphilisin Tuskegee, Alabama. Another cause was the psychological experiment cond at Yale University in New Haven, Connecti gave high-voltage ‘shocks' to other people whom they thought were: research subjects, but who were in fact confederates in the researc process who simulated their responses to the ‘shocks. iece of research, Leon Fe +r (1956) pretended to iphecy that predicte lying the group. Using deception in ex whose members believed in a for the purposes of s wed deception. 1g human subjects is hardly the sol led the positivist dream of 1e awesome powers of the Prot sviee role and an advisory cap: sciences have a long have legitimated legal and criminal-justice control over increasing, bers of citizens and have extended control far beyond the legal tions of the welfare state. The expansion of surveillance throughout the wciences are rarely mentioned IRBs. The IRBs essentially own, operate, and control the tokens.a great gap ‘and the means they have to realize62. John M, Johnson and David L. Altheide them as scientists and technicians; piety, in short, becomes a substitute culpability and of pote Human resource departments now ‘han: researchers. Faculty probl logic now shape our practices a is isthe present con- text, and ignoring it may lead to potentially serious (personal, legal, pro- fessional) consequences. Tis a mistake to thi Five Ethical Spheres 1g these differences allows one to contextualize “research ethics’ and to discern the implications and consequences of these spheres. Reflections on Professional Ethics 63 Personal Ethics of honesty before a tribunal or people or places, and se 1orms, and ethical obligations. i in social science research commonly occurs in acquiesce to ‘be dishonest in order to get honest data"? Rather than taking the moral high ground by second-guessing these personal and contextual decisions, perhaps itis more useful at this junc-64 John M. Johnson and David L. Altheide Reflections on Professional Ethics 65 ture to suggest that our larger in lectual and research community issues and demand strong ality of research informat riet responsibilty over i data atall stages of the less free today, knowing that we need our local IRBs to approve our future research proposals or those of our sudents? (Over three decadesago Ned Polsky: 1969) wrotea brilliant essay about ing in essence the importance for those who elect such investigations of ical commitments of loyalty to the settings and their and Douglas (1976, 1979) have advanced vari fair to say that all the advocates of this ethical attempt such studies and risk, uncertain ch (1968) was threatened with violence durin the grantgeting games’ of members, s between profess Research Ethics isis a matter of pride, not shame. The reigning ethic in the academy is: Going along to get along. Peace in our time! Professional Ethics to adequately inform or poses of the research, (3) how to gain access (0 a set obligated, owed, or required of the ‘research bar negotiation of how to gain and maintain the trust of the members of the }0w to ensure the privacy or confidentiality of the informa fed during the research, and (6) what and what not to report formally as part of the final research reports tions and aeceptané ‘There exists a voluminous literature on the above issues, and it is not of professional ethies inexorably grows like a bamboo shoot in a rain ‘ur present intention to summarize it IRBs concern themselves with these Foret /biw yous ear reeponilag’groinh ia esburces fc66 John M, Johnson and David L. Altheide rice, except those caught structure enforcement, so few people seem to take mi in the bureaucratic mesogasters of its com: Corporate Ethies researcher, ty. It tends to vary ns, states, provinces, regions, and nation states In Arizona, for example, there isa formal code for all, university employees. While in most jurisdictions there is commonly some ‘overlap between these corporate codes and the professional codes of schol- arly associations, the local codes commonly include more focused and concrete areas of interest, which may be related to specific events that in this community. think involved a young man who was studying drug dealing for his dis- sertation research, while it was widely suspected that he was using his dissertation as a front for dealing. When he was caught for drug deal- ing, there was absolutely no faculty or administrative support for this Il the other examples seemed: ld researcher John F, Lofland occurs frequent lua, partes, and interests, where there are many unknown aspects of the interactions between one’s in and one’s ‘guesstimates' of taking one course of action over another. This choice always involves Reflections on Professional Ethics 6768 John M, Johnson and David L. Altheide », perversions of the hiring process for political purposes are 1g on personnel records is insti sis legendary, and use of state mone (0 reward friendsand political ‘and what not to report nly inthe case ofthe professor who ran the w! woenix; he was allowed to resign in order to p ‘order to pursue some political purpose independent o acts, Such persons often use others and commonly hurt of ‘ethical agenclas. This is probably inevite ngaged in ethi- they take place after the fact. Ethnographic and other forms of qualitative research have proven very valuable in studying erime and deviant behaviour. This is an area where ts have debated their ethies for a long time, and there departmental actors whe hurt others for research topics such as these become th ly influenced by lawyers and their corporate (ee chapter 3, above). te Anmual Meetings ofthe Pacific6 Confidentiality and Anonymity: Promises and Practices LINDA SNYDER may enbanes findings and that are cor Confidentiality and Anonymity 71 Ethical Obligations Regarding Privacy [As Canadian researchers, our ethical obligations to protect privacy are enshrined in the Ty-Council Policy Statement: Ethical Co ncolving Humans composed jointly by the Can: Research (formerly the Medi and Engineering Research Ci ties Research Couné privacy and confide: and continually In addressing the context of emphasizes the need for research, icy. The document affirms the moral al principles related to conduct of this research, jo respect human dignity. The TriCouncil's Con- tat of en Ethie! Framework (MIRC etal, 1998: 5) recognize that diversity in research and in fundament to and throug! formation about purpose and process, that subjects may ‘make their own decisions about partieipation ~ usually indicating in writ ing the terms of their agreement to participate ~ and that participants “nt suggests anonymity as the best means of72. Linda Snyder ‘These guiding principlesare not unfamiliar to social workers, who are peel weer tin ics (1 Ak of Ethics, This code articulates similar core values regarding the ‘worth and dignity of every human being” jent authorizes in writing the release of spe sd under the authority of a statute or Clearly, our responsibilty as researchers, and for some of us as social workers, to protect the privacy of human subjects in our rescarch is para- ‘mount. The complexity increases when we add further principles and objectives. Research Objectives for Trustworthiness vist paradigm conceptualizes as ‘multiple realities (Lincoln and Guba, 1985:314). Researchers undertake a number of research strategies or activities to enhance the credibility of research, in this paradigm. The two with implications for ‘protection of privacy’ king process involves sharing prel pres sions with research participants and secking their feedback with respect to the accuracy of the researcher's interpretations with the human sources f triangulation process recommended by Contiden ‘The objective of the criterion of transferabi ‘generalizability of findings to the larger pop cient descriptive data to make such similarity judgmes Hence reports ick description,” providing a wide range of 1 direct quotes. relevant informati ‘The Challenge Mustrated: Canadian and Chilean tiple case study looking at women's employment lives asa means of addressing poverty (Snyder, 1999) In both Canada address poverty in terms of both tomes related to economic and psycho- ive results and soci74 Linda Snyder identified in any publication or to those that do not disclose my i searcher] obtains my cor (Snyder, 1999: 406-7). | sought approval to study the programs through their senior adminis- trations and offered them formative evaluations of their programs in re- ‘urn for their co-operation and the opportunity for them to review the nary findings prior to my completion of the final reports. From the beginning. there was jon 10 disguise the identity of the cussion .. Quotations will ntity, unless Linda (Snyder, the re- ie that may disclose my identity’ Use to levels atwhich the isue of anonymity cease (or cases) and that of an individual person within a case (or cases).” He does not consider ano- nymity desirable, and he makes a strong case for being able to “integrate research" (143). In situations where he does ble... in suggests compromises such as provid- ing anonymity to the individuals, but leaving the ease(s) to be identified. 144). This latter position is reflected in the protection of pri- ‘acy promised in my study, However, itis arguable how well that promise can be ensured at even the individual level Practices: The Realities of Confidentiality and Anonymity It was my experience, working in a research modality employing thick rovide anonyanity to the ies, to varying degrees, they the case of Prisina, the director, Valentina isa figure of considerable historicalimportance and is widely known. Prior publications offer valuable historical and contextual material for rave referenced them and quoted from them. One includes testimony from Valentina Bone: [After the military coup 1 was out ofa jb lke so many others, in ashore ime serve asa catharsis, Every woman began to translate her story into mages into embroidery, but the embroidery was very sow ideniality and Anonymity 75 and their nerves weren't up to that. Without knowing how tot ya was attracted by: together we very quickly ris remained like a true ‘was dramatic to see how the also it was very enriching o sce trength and that we can or who ies graduate of the programm) (The instructor] places a gre derstanding and gi ity for the purpose here. iber-checking process. When ings, members can recognize e:76 Linda Snyder ly was practical on ry few situations. So. 1 of highly recognizable and sensitive uming exercise to a hi ‘The Waterloo Region's Employment Resour ents (the governmental example in Canada) sending referrals © Which it referred m: ange course). In each eral agency's cont Program for Single Par- primary agency key agency 10 "Focus for person whom T had interviewed fo cal proximity to the prei Biting the Hand That Feeds You, and Other Feminist Dilemmas in Fieldwork MERLINDA WEINBERG the neat achievement presented th the researcher accountal80. Merlinda Weinberg ‘Theoretical Framework fering perceptions ofthe world. lationship between researcher and research to examine how that organ and knowledge. sed maternity home in Ontario (Child sectarian, non-profit chari- sntial care for young single years. They were all single young women, usually with few material and ‘emotional resources to help them through their pregnancies. While ad- mission was almost always voluntary and not mandated by the courts, "many of these young women had few, if any other options for housing, ‘The Text Chosen According to the home's executive director, the primary document used to manage the work in the maternity home was the resident stay plan This document, according to its developers, was designed to en- the province requi of the home every year. According to the executive director, an impor- tant component of those agencies’ evaluations was an examination of the RSP by the provincial Ministry of Community and Social Services to de- termine if residents had signed the document to demonstrate their in-82 Merlinda Weinberg activity while she was in residence. The executive director saw this docu- ment as an active regulator of the work in the residence. The Method “interviewed single pregnant teens to understand their perspective about, the use of the RSP in the maternity home. I chose a focus group as the most suitable avenue to gain data from th thin a one- semester course. Being both an outsider and an adult, [ assumed that adolescents would talk more if they were with other youths. One ind- vidual's ideas might spark thoughts from others in the group. The inter- action might also prompt increased openness, since when they hear others declare similar comments people may express thoughts not otherwise wish to share. The focus group allowed omarion, highlighting areas of agreement or dsagreement a ‘The other was due to deliver that week. One young woman was Afro- Canadian, one was francophone French Canadian, and two were Anglo- Canadian wl ‘A smallgroup discussion transpired over about two hours, which 1 audiotaped. I led the participants through the discussion, guiding the contentin a semistructured way, planned areaswhen Srobient aggeseda ple at secmed fr A Pivotal Problem | was in for a major surprise when I showed the RSP dents. My plan had been to determine from the residents’ p ss how this ocument acted as a ‘third party’ to the ‘conversation’ between them aand the staff. Despite the executive director's stance that this was the primary document used with residents, not one of the four interviewees, was familiar with the RSP in its entirety. Nor were they sure if they had. ‘ever seen, used, or signed aspects of it. Afier obtaining their permission to obtain the actual RSPs, I discovered that on all four of their RSPs only and That Feeds You 83 the first one or two pages of a seventeen-page document had been filled aff person. On the remaining fifteen page wanted to see exactly what their files contained, They marched out of our ‘meeting and demanded to review their file, only to be told by an adenin emerged in the rese Dilenona I: Countering Hegemony versus Recognizing the [Need far Some Social Control hhad to be careful in speaking for them, Yet asa social worker and a feminist researcher, ig relations of power. Conse- -nts went storming out of the les. Iwas delighted that they understood room demanding to se84 Merlinda Weinberg their oF ‘asone componentof that dismantling, may be important, but ‘whole story. While I applauded their raised awareness, I expe anxiety. found mysel portrayal of staff mem- bers as agents of social control who unwittingly and/or intentionally maintained the status qu respected and emp: bby workers in providing services to ‘marginalized, in some instances a staff member has no means to redress the marginalization of residents, tis not just the residents who are con- 1¢ powerlessness ofthe staff is not of the same degree as that Bur social service workers must walk a fine line between ‘meeting the demands of an unresponsive system and supporting the in- ice and freedom of those whom they serve. ishome did provide a: n would have been additionally impoverished. Biting the Hand That Feeds You 85 subject’ (Smith, 1987: their importance ‘These rationales led to my decision to present the results ofthe focus group to the executive director. Dilemma 2: Maintaining Relationships of Trust and Respect with Those Whose Work a Researcher ‘This dilemma revolved around staying true to the results of the research and to the young women whose involvement in their RSPs was being by- passed by frontline workers, while maintaining the trust of those same86 Merlinda Weinberg members of staff. How was Ito ensure ‘when in fact disagreed (Martindale, 1987)? Would my stance be sect nn? This concern left me feeling that I was being deceptive, misrepresenting my interest and support. My research uncovered the problem that residents were rere revealed to the proviny funding were a consequence of my judgment about ‘of my research. A critical element is feedback about my resear ors analysis, would provide her with my fine onk the residents had left the home, to protect spondentsfrom Biting the Hand That Feeds You 87 any potential negative consequences from staff members" reaction to my ings. ‘Asa student who needed a research population for my disse those with lesser institutional power (for exam ever funding of a project or access to data is involved, tial ofa cor ictof interest for the researcher i fu ling the terms of the project ethically and meeting his or her own professional or personal reeds, results to the executive director, T was ambiva- she might feel angry and betrayed and. and vations asa researcher with those of the exec hnad been researched and who in turn then added her own perceptions.88 Merlinda Weinberg [My sharing with her the uncomplimentary results ofthe research pushed. the process past simply amassing data to fulfil the requirements of a ‘course without feeling obligation to the people who had opened their ‘edge on the same causal plane as the objects of knowledge. Selfreflexivity involves the researcher's taking into account his or her own conscious. ness. The selFreflexivty in whi ing, The first was the non-compliance of staff towards a ‘expectations visas the RSP. I suggested that perhaps the form itself was part of the problem, being too cumbersome and burdensome for over- ‘worked staff members to fill out. This problem, however, was not her primary cor a place where th that the report be given to the employee responsible for tice in the home, She also asked me to provide a trai people om staff. Since an ouside expert tends to she felt that they would be more inclined to hear and respond positively to issues identified by someone who was outside the agency, but whom they respected. In this way my ‘insider-outsider’ status could be a ben- fit I agreed to provide this training. ‘One strategy that facilitated her openness to the results was ing to present the data in as respectful a fashion as possibl program forthe nized the contribution that the home had made to their lives ‘The concern about damaging the home’s funding emerged as one of | the less thorny issues to resolve, although theoretically it could have been very difficult, Because I shared the results with the executive director, she Biting the Hand That Feeds You 89 principle took precedence when two. rate issues brought this conflict to the fore. First, i prov90 Merlinda Weinberg ng as I attempted to resolve the ‘On Giving Credit versus Preventing Harm, or on Revealing versus [Not Revealing the Identity of Interviewees remain anonymous rather than t receive iy, How then could I provide eredi The differing needs of participants in the research about whose claim took precedence. My agreement to give residents credit Biting the Hand That Feeds You 91 and my intention to promote the home came into contfict with another ns had contributed to the ide! ne home. How Far Does Confidentiality Extend in Fieldwork? Having been a worker in the maternity home, I had access to informa: tion and to relationships in an informal way that could not be covered by signed releases, Confidentiality isa key ethieal precept addressed by every code of ethicsin research (for example, University of Toronto, 1979; MRC terview directly any ith them. The ted the workers to provide all the informa. requested, and they seemed only too happy to comply. For92. Merlinda Weinberg ‘example, after the residents explained that it was another document that {governed their lives in the home ~ and I requested copies who had developed the alternative fo expos substituted its own, truncated version. In asked about the alternative document, the entire staff's ‘resistance’ would have been revealed by the residents’ focus group, but I had underscored this lapse by describing the alternative documentary proces intended to jeopardize anyone's job. Nor did I wish a staff pers rebuked. "Given the very supportive and open manageme , whether or not T had non-malfeasance was not the highest good, contrary to my decisi the previous dies "Additionally I began to wonder about the application of confidential ity in field settings. I had not promised confidentiality to workers, only had been to protect the cont formants at va dentiality of staff as well. In levels of the hierarchy, possessing different the organization, comprehensive confiden impossible. Choosing whom one will prot portant consideration, Context is significa jon of relationships; fan, 1982). People subscribing to this orientation have a greater propensity to take the standpoint of the ‘particular other’ rather than that of the ‘generalized other' (Benhabib, 1987: 78). According to this, orientation, moral problems arise from competing responsibilities. When Biting the Hand That Feeds You 93 an ethic of care predominates, moral judgments are more contextual ‘my profession and to myself. The researcher must attend to many points of view. The paradox is that a multitude of opposing truths, needs, and of different part to the needs of the most disadvantaged in determining which route to94 Merlinda Weinberg stake to fos on one to the ‘attempted to ensure that the a of young women's daily Tes were understood and respected, I came to tindestand the ficulties of dismantling hegemony and togve credit to those who inthe real and murky world of practice are attempting, how: ever imperiecty to meet the needs of lest privileged young women. By Suiving ora dialectical relationship withthe cxecutve director ensured that she undersood in anew way some ofthe contol felt by residents forvaluabe eas for fiture research ome. This isa small step towards pros tmore equitable world Notes ‘Two groups of people helped prepare this essay based on research for a doo: toral course. First and foremost, [wish ‘maternity home, without whom there would have been no research. Also my sincerest appreciation to four scholars who provided feedback on earlier ‘versions ofthis work: Deersa Mandell, Margaret McKinnon, Margit Eichler, and Will C wan den Hoonaae. red some identifying information to protect the anonymity ol maternity home. 8 My Research Friend? My Friend the Researcher? My Friend, My Researcher? Mis/Informed Consent and People with Developmental Disabilities S. ANTHONY THOMPSON Research is filled with ethical dilemmas, The first problem that research- ion of process yrming for con: ‘engaging, intrusive, and ongoing andor when participants are pa larly vulnerable because of their marginal st ith developmental disabilities. Ames and Samowi Proced have emerge and name the kinds of atrocities prac96S. Anthony Thompson research: ‘Scienti in Nuremberg.” But German mei as several recent books ave amply shown, and the ‘was relevant to medical research in the United Si lesson of the Nazi experien« being of each human subject n social sciences, Targue, medicalconse certain research protocols, such as those fal ‘qualitative,’ Some observers may say that qualitative methods in speci education are ‘something a little out ofthe ordinary’ (Ferguson, 1993). “Throughout this essay, I hope to show that there is nothi consent, both conceptually and procedur who have developmental disabilities ocess, Covert research designs may be {gression of human rigl ions (see, for example, Bogdan et 1987). In some of these cases formed consent of participants. important as the research outcome and may speak able-bodied research practices infiltrates our thinking and beliefs about My Research Friend? My Friend the Researcher? 97 Informed Consent Definitions Characteristics of Participants Not only must an informed-consent design be tailored to the research method, but, more important, it must respond to the circumstances of participants. In research the design of informed consent, Definitions and Conceptions of Informed Consent through a reasonable or refers to freedom from coer and effectively ad- ing so advised ake every effort98S. Anthony Thompson bbe deemed legally competent to grant consent. Competence has partic lar significance for people with developmental disabilities. Legal Competence tence may be legally removed only through due process, ess. Typ incompetent to participate in a research project. For example, a court ‘may schedule a guardianship hearing asa result of a determination of incompetence, Even if a hearing is not convened, however, the process has consequences, Once a person has been deemed incom participate in a research project yns of competence may other contexts (Bach and Rock, Personal Dimensions and Informed Consent ipants that are considerably lex (Ferguson, 1998, 1995). Sec- ment to community service or involvement must change if the research is going to be effective and relevant’ (Tom, 1996: 347; see also My Research Friend? My Friend the Researcher? 99 People who are legally competent and nonhandicapped who grant consent may become confused (or misinformed) about re~ searcher-participant relationship when an undertaking is prolonged. Bxpectatios of Friendship ‘The firs difficulty with consent is that part from a researcher (see Stalker, 1998: 10) other people have such a negative value are those with so-called “normal” people’ (Worrel Booth and Booth (1994) comment that the ‘research’ relationship is100 8. Anthony Thompson. Another consent difficulty has to do with the perceived ‘comfortableness’ ‘methods. Usually, the researcher conducts interviews on sown ‘turf’ Consequently, the participant may share the researcher than he orshe is ready to and may regret developmental disbilty has been sexually abused (see Sobsey ich recollections of abuse may appear in te public sphere jer must provide (and keep providing) all, jon necessary for the participant to decide to continue partici ‘or not. One key piece of information concerns the ‘limits’ ofthe research interview; it is not therapy. Therefore, in ns where sexual abuse (or any form of abuse) is disclosed, researchers must make Voluntariness cogs is their lexibit- ‘My Research Friend? My Friend the Researcher? 101 ‘much personal information. Researchers must continuously verify con- however, most have attempted to de- termine informed consent only once. Contextual Factors and Informed Consent for design of disabilities, Institutionalization Lack of Decision Making Opportnites ‘One of the main issues here is how resid cision making. More and more, researchers recognize participants’ capa bilities in making decisions as related to lack of practice, rather than to102. S. Anthony Thompson nee’ According to El (191786): Bven or ind to comprehend and communicate would nged and exten- for this lack of oppor lusters of causal influences: environmen- ‘sees generally an ideological selfdetermination and choice making, in practice limited residential options, inflexible service deliv. ‘ery models, and constrained financial resources often reduce occasions for decision making. ‘Thus persons with developmental disal caregivers and/or other able-bodied pers yr example, one choice ‘if oth are undesirable, then the locus of ndeed may be) external (see perience any freedom of choice. These sit ‘quently to people who have developmental disabilities (Jenkinson, 1995; given freely and ich a history. Persons with mental retardation or developmental disabi living independently (or semtindepender therefore more opportunities and resource led facilites constrain experi- ‘My Research Friend? My Friend the Researcher? 103) searcher’s question 1999; Tymch 1997). Second, they may acquiesce ~ that is, go along wishes, commands, or requests of the (often) able-bodied researcher or practi Incorporating Personal and Contextual Factors In short, in designing informed consent researchers must anticipate and developmental disabi search relationship and lesign that encompasses these f psychometric tests (see Ty 1997). Commonly in practice, the researcher admit once in any consent design ~ betore the start of a project. Alternatively104 S. Anthony Thompson tools or indices as a guide, fe the sexual consent of persons with developmental disabilities (erelationships. Admittedly, consent in sexual contexts s difere from consent in research. As [ have pointed out, however, persons, developmental disabilities may perc pose the following voluntariness, and information: the research project gestural indications (such as body language that indicates “uncomforts- bleness' or a desire to escape) ‘an alternative com the researcher fa se of interviews or participant observations? Does there need to be a plan for participants to remove themselves? Who will implement such a plan? Do partic to be present throughout the project (0 he particular commu any part ofthe research endeav- or future community or social ?? How does the researcher know terviews are not profes rants understand the they receive and/or req) this? Do participants understand that resea sional therapy sessions? In other words, do pau My Research Friend? My Friend the Researcher? 105 boundaries of the researcher-researched relationship? How will the ants understand the conditions larlyin the area of confidentiality. Phtiaka (1944) notes that confiden ity i both internaland external Confidentiality and participants’ privacy id party such as an advocat |. about the progress, status, and106. Anthony Thompson ‘ducting social research’ (Hertz, 1996: 4), The questions posed here may seem either like a veritable wish list for the perfect research too bothersome and too overwheh rant No. 75298-1744 and bya grant from the Laurel Group, communigy-ased organization ‘with autism, both awarded to, Amony Thompson. | Pat Mirenda, and Allison Tom for thei gracious reparing this essay; however, I take fll responsibil 9 Hazel the Dental Assistant and the Research Dilemma of (Re) presenting a Life Story: The Clash of Narratives ERIN MILLS Life history and narrative analysis have long been popular tools for qualitative researchers attempting to “unpack,” appreciate, and move tance to the interviewees, Narrative analysis does not, however, provide an unproblematic under sanding of the complex life history of an individual or social group. Postmodern assaults on the concepts of the rational, ordered, coherent, itself need to be taken seriously. melodramatic, have their108 Erin Mills lences for how we use those life stories to pursue our sts. A major contribution of narrative analysis is the tant to him or her in their larger social processes — as researchers. Used asa start- to look at actual practices and 1g out real lives within a specific period. Only after this data iscol hhave had the opportunity to tell their stories in task of providing the links between their lives As Chase (1992) argues: ‘By analysing the complex cfc instances, we learn about the kinds of of people and we learn 1¢ level of lived experience record and allow ~ for ble. Unfortunately, as Chodorow (1989) documents in her case study of early women psychoanalysts, this is not an easy task: ‘When a researcher wants to respect the voices of other women and is con- cerned about a history of dissolving differences into a hegemonic unity [problems when the voices she wants to respect seem central eategories in her research, was ‘people thatare not ‘otherwise important to them, implying false consciousness ina group of ‘women and thereby undercutting one major reason why we were doing fem nist sciology in the first place? (199-200) Hazel the Dental Assistant and the Research Dilemma 100 fe-history case study, | explore below the complex ship that develops between the biography of the autobiography of the researcher and the ethical ‘of narrative story of Hazel viewing techniq) her own words, that Hazel dos problems that I encountered trying to take such a perspective into the field ‘The second section reviews t the research encoun raphy. The extent the voices of research subjects? to the people who share ‘given’? As Craburee and Mi find a way to honestly represet jn understanding. be accountable to the voices ofthe pa reconstructing and re-presenti ty to be taken lightly or an issue Hazel: A Dental Assistant's Life ‘This isan interview with Hazel (a pse ) about her life asa dental assistant, Hazel is sity-three years old and left dental assisting in 1979.110 Erin Mills arses andl assist ‘as president and board mem- ras the newspaper returned to her hometown, where she worked in private prac: tice until 1968. After a dispute with a dentist she quit and applied to work asa dental nurse with the regional health unit, where she stayed until her retirement. ies in one of Hazel’s scrap- to understand her experi why discussing her experiences: ‘Why would anyone: things, they were so long ago, why me? I really did not do anything very interesting or any different than any Like many dental assistants, Ha ‘become an assistant, but rather recalls having the ‘choice’ made more or less for her: know a thing about dentisry. The ing around here if you were French and were set of plates, not dentures, plates. I belive he charged Hazel the Dental Assistant and the Research Dilemma 111 not for me. I came hose any back, 4 not know whether oF not I was, nurse or goand marry a farmer,” but Hazel ignored my probes and started. talking about her early days as an assistant, She was particularly keen that period. She talked with amazement abo and poor hygiene practices: and things ready? He [the dent jevable hher feeling ‘sick to my stoma She also talked abo112 Erin Mills 1g. This doctor handed me a dollar. { ma h friends around than I did in dentistry I realy did. necessitated a hysterectomy), there were ‘alot of girls that never, never got” Hours were long and often unpredictable, During the 1950s and 1960s, indays. She was on ig teeth: When you think back to keeping the office clean, empry= ing the garbage, doing the books, answering the phone, mixing materi- doing xrays, putting them away, doing your charting, you had to be ‘organized, look good, and be pleasant with the patients." ited to the office, however. At the start of her then Thad to-wash gender relations at work, to elaborate: ‘The office was joined to the snow.” Odaly, she hi to say when I asked her how she felt about ‘combining domestic chores with her assisting duties. She stated simply114 Erin Mills the reception «put on by the board of governors for the Royal College of Surgeons (RCDS) and the province's dental society. “There would be in- ‘tations sent out .. by the Board of Governors... For receptions. Was ia ‘mesting? No, there would be hors d'ocuvres and entertainment. Reception used properly, she'd go and com) them, usually told them just to get out. It’s the job.’ She offered no fur ther explanations and resisted any other probes. To her i | having problems, then she should find another job, beca trad our own dinners and parties ing married and baby showers. Th complete absence from Hazel’s story of any notion of the ‘polit ing, Not only was she an executive member and past president me up one night and suid “Hazel what the heli Hazel the Dental Assistant and the Research Dilemma 115, needed a break, so I gave him two weeks! novice wrote out my cheque, and I sid, ‘You can pay me.’ He did sig the ‘cheque. [went over to the Department of Labour, he tied to put a stop paymenton my cheque, and he did have to pay me.I gave him two weeks, 50 he owed it tome, What a bugger. tory she talks about working with some dentists who “He'd haul off and them, oh my word. wasattacked by a patient prove working conditions, I was perplexed by Hazel's story. Here is a women who had experienced harsh working conditions and been a member of the association for fifteen years, Yet she never talked ing the need to take action. the explanation for her behaviour may relate to how she viewed fears in dentistry. Hazel does not appear to perceive the work: Dentistry ome has hecome a racket, The TLC [tender loving care] isnot there the way it used to be. I can recall one family we had ~ four young children, The father dropped dead, He had just had two partials made, and116 Erin Mills ‘debt. You don get that toda: In the same sentence Hazel can talk about doing the laundry for every- ‘one at her office, while mentioning how kind the dentists used to be “When Iwas sick the number of flowers that were sent to the hospital Bll and Linda (dentist and wife) at night would bring food and kindness. ‘You just do not get that today, More personal years ago. I did the laundry too, towels, smocks, and uniforms, and I got paid well fori The fact that domestic duties were combined with other tasks did not ‘dentistry is litle more than a ‘racket’: " fora few minutes. But now i's, “How come that appointment wasn zel. ‘Ifyou came and said to me, ‘would say to you, “You better thi better.” Biography and Autobiography Hazel constitutes an integral part of my overal his search project ry of dental assistants and their association. Yer the interview le Hass speak wherever possi: nfortunately,as the quote above from Chodorow implies, this isnot an easy task, Like Chodorow, I found myself seeking answers to questions between researcher and researched must become more equal if we are to avoid imposing our own narrative on that of our subjects. As Chodorow notes118 Erin Mills tieux. Drawing on a basic premise ofthe sociology of knowledge and on the ‘methodological injunction that we pay particular attention tothe ‘elaionship ofthe researcher to researched, came to see my ideas, as well, being gender erconsciousness and experienced a social category and aspect of professional ) «das to why a woman who experienced long hours, bad wor il low pay did not see the need to move the dental association into a more progressive position. Did she not see attending the dentists’ conventionsas hostesses’ and being asked to wear their uniforms at formal receptions was demeaning? Could she really ar- heir wwe get. My views on the p not the same as hers. She these social networks played in their daily lives. Pethaps these ‘socials’ provided a forum for mutual support and understanding that was una vailable to them as assistants working in ‘one-giel offices." The association the so ‘ers make a face of awful working cor served to reinforce the impos story out of a lite,120 Erin Mills the long hours, low pay. and demanding workloads she experienced during hher work lif. On the isue of pay and benefits, there seemed to be very “upside When Is in private, there were no benefits. {and got withthe heakh unit. You worked 1 were sick, Sunday, if anyone called. 1 was just thinking that the 100, and he'd came in and had dentistry done one is way, Hazel wer work life. in the interview. The q) ‘ing Fontana and Frey (1994), we need to develop a sensitiv the problems presented in doing interviews by’122 Erin Mills specific, but shifting, contexts where and “political” are inseparable. Identity is negotiation takes place within multiple contexts, then these ‘contexts should also be examined, and the researcher should attempt to determine if the respondent develops m \gaged in a process of interpretation and reconstruction that Hazel might find appalling, But what ofthe negotiation that occurs forthe researcher and between the researcher and the researched? The issue of interpretation tiation becomes far more complex once we acknowledge the fof multiple and possibly competing voices in the r detail, the labyrinthine connections that must inevitably exist when (wo lives clash during a research process aimed at producing a single life his.10 Breaking In: Compromises in Participatory Field Research within Closed Institutions MARY STRATTON n vis vis educational tran- tly about their experiences, ‘experiences and researchers also mete out such treatment to groups such as psychiatric survivors, prisoners, welfare re- cipens, he dsbled, and ethnic minorities fon research (PAR) is a method ofc is a process its of three parts jon (Maguire, 1987; ical and practical any research project. When the ‘community are tightly controlled (which is not uncommon among op- pressed or subordinated populations) thi tainly, many levels process Research in a Total Institution tempting to “break PAR or moderated straints imposed the subsequent by Goffiman ( within such an institution and impedes implement ‘The elementsalso contain tensionsand contr ‘that can serve as “cracks in the wall’ to allow entry to the i its inmates? jon of the PAR ideal fliman shows)126. Mary Stratton My observations suggest that the ditions inside the average day schi purports to do one or more ofthe fol (Sociology of education literature contains arguments that mass school ng serves any of all of those three purposes.) To that end, total insite jons have tightly scheduled daily activities that proceed at pre-arranged times, enforced from above by a system of explicit forn igs and a body of officials. Al these daily activities take place in the ‘+ “immediate company ofa large batch of others (6), who are * under the same auth Breaking In ‘The conditions described above all apply (to some extent atleast) to the high school, Breaking into and doing research in a total institution in- ‘ons (especially schools) routinely ‘move ‘large bat disruptive incidents — imagine in contrast the chaos that would eme influence any res cand preserving oppor cacy and confidentiality will be a constant chak dictate that a teacher must be present in a classroom at all ies, A room designated for conducting interviews will probably be close to staff person. There will inevitably be sudden and ‘ruptions and possibly changed locationsata moment's instivution. Carving, Second, for such research conditions to be possible, at least a few of the officials and members of staff must collaborate in the research, Compromises in Participatory Field Research 127 process (as happened with Goffmar A Case Study To present this case study I have divided that process into five stages: setting the research agenda (including identifying the research issue); designing the research instruments if the resulting knowledge (reporting results). Action for change follows from the reporting of results. the Research Agenda Designing the Research Instruments As I noted above, s ofthe researMary Stratton proved by aj times a year. Application rules required the submission ofa final version pation of the OAC students was questionn: [was not allowed to ask about things such as el ity) and suggested 1 lyable 1o gain the collabo ing their summer break at il backgrounds. As well as cy explored the best way to broach viewpoints among stuclents. Theie ately form the research sites, and those ‘completed high school. Compromises in Participatory Field Research 129 yroposed that I gain the voluntary participation of students during lunchtime, “spares,’ or before or after school - a seri- Collecting the Data “The boardimposed constraints on my access to a wide range of students hhad hoped to have a team of student who could help with the questionnaire sessions, especi 1 lower grades.” The PAR ideal power dynamics and insufficient resources ther the time nor the resources even to attemp! students just out of high schoo! would have been a possible compromise solutior between university and high sch along with lack of taining resources, made it impossible. I would sug. gest, however, that participatory researchers need to take a much closer Took at this issue130, Mary Stratton as I could aff 1e constraint on in-class time was a barrier to participation, which was much lower than for the other three sites where I was event ime? ‘An official at the other board advanced my proposal and formally sup- \cipals were willing. I already had con- tion (where I had previously interacted supported me. ‘number ofthe grade niners neglected to return th ime and could not therefore take part! In the end, I gained about 214 completed, properly consented ques- ynaires and 52 i made every effort to include a take part than others as teenaged mothers and students with speci gaining data f ismiss survey.type allowed all students (even if they had not completed the question it raised, Teachers, students, and the researcher all enjoyed these sex sions: they provided a participatory moment for far more students than would have otherwise been possible; students liked the questionnaire (which was all about themselves), which increased their willingness to ‘Compromises in Participatory Field Research 131 view and, participate in a lengthy personal a space for open comment atthe end of the quest comments and reflections roviding background data, the pre-completion of the ques- tionnaires allowed the random drawing of a site, gender, and gracle, While interviewing al xyswo students used checked the remaining questionnaires for any written reau terviewed. This added to extra interviews. One nonsclected approached me while I was interviewing at his school. I offered him an ‘collaborator and spoke with me allow them sixty o seventy minutes to talk about their experiences and views. The interviews were supposed to take one period, and in most cases this wasa comfortable time frame. At the school where interviews occurred. at lunchtime there was only about forty minutes available, and this was Analysing the Data ‘The data collection produced a daunting task of data analysis. Entry and analysis of questionnaire data demand a large amount of time, as does