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Emergent Ethics in Qualitative Research Kathy Charmaz.

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1 Emergent Ethics in Qualitative Research Kathy Charmaz

2 Paul C. Rosenblatt—Ethics of Qualitative Interviewing with Grieving Families -- Farm Accident Study I followed the husband from cow to cow, telling him things stated in the advertisement for the study and answering his questions. He was obviously hurting as we talked, using jokes and laughter to hold back tears, but said he would do it, and I arranged an appointment for a couple interview. I followed the husband from cow to cow, telling him things stated in the advertisement for the study and answering his questions. He was obviously hurting as we talked, using jokes and laughter to hold back tears, but said he would do it, and I arranged an appointment for a couple interview. (1995, p. 142) From Death Studies 19: (1995, p. 142) From Death Studies 19:

3 She: I think (very loud) There’s times I feel like there’s a wall between us since then [the accident]…. Had I violated my agreement with the university’s IRB by allowing the wife to use me to get her husband to talk? Had he been coerced? I gave him room to say no to an interview and to say no to any or all interview questions. But he was not exactly a volunteer….Perhaps the most ethical thing I could have done was what I did, to allow the interview to be used by the wife (and I think the husband) as a catalyst for their healing. (p. 143)

4 My assumption—Different goals pervade the research process Goals of researchers and research participants differ Goals of knowledge, ethics, and human subjects review boards differ Grappling with these differences spawns emergent ethics

5 What are emergent ethics? These are ethics that researchers develop or writing the report During the midst of collecting data, conducting the analysis, and/or writing the report After reflecting on their research decisions and directions After reflecting on their research decisions and directions

6 Questions to consider What are the characteristics of emergent ethics? What are the characteristics of emergent ethics? What is involved? What is involved? When do researchers invoke emergent ethics? When do researchers invoke emergent ethics? Which assumptions support these ethics? Which assumptions support these ethics? What are the implications of emergent ethics? What are the implications of emergent ethics?

7 Patricia Henderson (2005) on studying care of dying AIDS patients in South Africa Ethical ways of interaction emerged in the give and take of relationship and intimacy. We became aware of a process of reconfiguring ethical ground through time. It is also through time that we have come to see our inadvertent collusion in a failure of ethics in relation to Mandla's mother and Vuysiwa. (p. 89)

8 Ethics as contextual constructions No action—whether of the research participant or of the social researcher— stands outside of the contexts of its production No action—whether of the research participant or of the social researcher— stands outside of the contexts of its production Whether accepted or contested, conceptions of ethical principles, definitions of ethical dilemmas, and ethical choices and actions are constructed Whether accepted or contested, conceptions of ethical principles, definitions of ethical dilemmas, and ethical choices and actions are constructed

9 Monica Casper (1998)—The Making of the Unborn Patient: The Social Anatomy of Fetal Surgery I care too much about the issues raised by fetal surgery and the unborn patient to assume a polite, reasonable distance, and instead embrace a politics of engagement that recognizes my own immersions in the worlds I study. I have been moved and transformed by this research in multiple ways, and fetal surgery is something I shall continue to think and talk about long after this book is published.

10 Casper (cont.) My politics and intellectual assumptions have been shaken time and again, precisely because fetal surgery evokes persistent debates about fetuses, abortion, women’s roles, the health-care system, and rescue technologies. (1998, p. 25) _______ Monica J. Casper The Making of the Unborn Patient: A social anatomy of fetal surgery. New Brunswick, NJ: Rutgers University Press.

11 When are emergent ethics problematic? The meanings of emergent ethical practice, as with other ethical stances, may be contested and open to multiple definitions. The meanings of emergent ethical practice, as with other ethical stances, may be contested and open to multiple definitions. You may see my ethical decision as an account, a justification You may see my ethical decision as an account, a justification

12 Jay MacLeod (1996)--on withholding information in court I decided to say nothing about the argument that preceded the shooting….I didn’t feel good about my role in the proceeding, especially refraining from providing information under oath, but neither did I lose sleep over the incident. Bourgeois morality has diminished relevance in a place like Clarendon Heights, where the dictates of practical necessity often leave very little “moral ground” on which to stand. (p. 137)

13 Tensions between Goals of Ethics and Qualitative Research Conducting qualitative research means tolerating ambiguity Conducting qualitative research means tolerating ambiguity Ethical questions arise in ambiguous situations Ethical questions arise in ambiguous situations Qualitative research assumes different values and directions than medical and quantitative research—starting points, standpoints, and priorities differ Qualitative research assumes different values and directions than medical and quantitative research—starting points, standpoints, and priorities differ General ethical principles may not fit General ethical principles may not fit

14 Tensions between Goals of Ethics and Qualitative Research (cont.) Ethics aims for general principles, a frame that informs a range of events and incidents Ethics aims for general principles, a frame that informs a range of events and incidents Qualitative research (now) aims for contextualized knowledge located in specific historical, cultural, social, and situational circumstances Qualitative research (now) aims for contextualized knowledge located in specific historical, cultural, social, and situational circumstances

15 Tensions between Goals of Ethics and Qualitative Research (cont.) Contextualized research aimed for situated knowledge does not always coincide with ethical theory or the premises of Institutional Review Boards (IRBs) Contextualized research aimed for situated knowledge does not always coincide with ethical theory or the premises of Institutional Review Boards (IRBs) Under certain conditions, the tensions are irresolvable Under certain conditions, the tensions are irresolvable

16 Monica Casper (2007)—Reflection about her 1998 study of fetal surgery I had been critical of surgeons and their lack of ethical reflection, to be sure, but I was also deeply concerned about fetal health and well-being. Surely we were roughly on the same side. __________ Monica J. Casper, Fetal surgery then and now. Conscience: The News Journal of Catholic Opinion 28(3):

17 Monica Casper—2007 Reflection about her 1998 study of fetal surgery Yet I had also positioned myself as an advocate for pregnant women, arguing for their safety, care, and autonomy while challenging many aspects of the procedure itself. In the end, I realized that my book had become caught up in the very politics about which I had written.

18 Review boards seek to protect: Vulnerable populations Vulnerable populations Institutionalized populations Institutionalized populations Their sponsoring institution Their sponsoring institution The researcher? The researcher?

19 Review boards seek to ensure: Informed consent Informed consent Anonymity and confidentiality Anonymity and confidentiality Lack of harm to subject Lack of harm to subject Benefits to subjects Benefits to subjects And increasingly-- And increasingly-- Perceived quality of approved research projects Perceived quality of approved research projects

20 From ethics creep to surveillance march? The language of ethics has been transformed by assumptions of risk and surveillance The language of ethics has been transformed by assumptions of risk and surveillance Boundaries blur between ethics and surveillance Boundaries blur between ethics and surveillance

21 Expanding ethics review of human subjects research 1. All Federally funded research projects 2. All funded research projects 3. All graduate and faculty research projects 4. Special scrutiny for “sensitive” topics 5. Rejection of research proposals on vulnerable populations 6. No identifiers—in computers, on reports 7. No undergraduate student research beyond the classroom without IRB approval 8. Fewer expedited reviews

22 Kevin Vyran’s Amended Informed Consent Form to Inform Himself In signing this Amendment Form, I hereby grant myself consent to utilize all of my own past, present, and future writings, drawings, and other of my own personal records and creative products for the purposes of research and publishing purposes. I understand that since this is an overtly autobiographical study and my identity as the author will be publicly- knowable, I will be identifiable in all published accounts. ( SSSITalk Mon., 23 Feb 2004).

23 How do institutional review boards operate? In brief, these boards: Emerged in response to worst case research Show substantial variance among institutions in structure and in deliberations and decisions Show substantial variance among institutions in structure and in deliberations and decisions Invoke medical and quantitative models Invoke medical and quantitative models Rely on general principles—may not distinguish between types of research Rely on general principles—may not distinguish between types of research Reduce principles to procedures Reduce principles to procedures

24 Unrecognized and/or unacknowledged differences between: Discovery and deception Discovery and deception Preconceived (FORCED) research questions vs. emergent inquiry Preconceived (FORCED) research questions vs. emergent inquiry Reviewing the general design of qualitative research and changing its focus Reviewing the general design of qualitative research and changing its focus Pursuing knowledge and protecting the sponsoring institution—no risk proposals Pursuing knowledge and protecting the sponsoring institution—no risk proposals

25 IRB bureaucratization Minimizes the problematic aspects of on-going informed consent Minimizes the problematic aspects of on-going informed consent Assumes that harm can be specified beforehand Assumes that harm can be specified beforehand Reduces possibilities for studying up Reduces possibilities for studying up Overlooks organizational and macro power arrangements Overlooks organizational and macro power arrangements Vitiates pursuing investigative social science Vitiates pursuing investigative social science

26 Kakali Bhattacharya (2007)—Fixed and fluid understandings between the researcher and researched B Neerada asks me if she can stay with me, as she thinks of me as her elder sister. In the context of Indian culture, this is a common kinship relationship that girls form with other women older than themselves. I begin to think of what I would have done had I really been her older sister. Would I have left her alone? When should my researcher self kick in?

27 Bhattacharya (cont.) Because my researcher self perceives the entire conversation as data, I question if Neerada consented to my using any and all information to which she has given me access as a re-presentation of her experiences? (p. 1096) Qualitative Inquiry 13:

28 Bhattacharya on Neerada’s trust: Granting me such privilege becomes more of a burden than a relief. Does she understand what it means to give me such access and permission? Should the researcher play the role of a protector and tell the participant the implications of sharing such information? Am I assuming that Neerada is too naïve and incapable of understanding the qualitative research process? (p. 1098)

29 Problematic areas for IRB committees and for the researcher ●Sustained research with the same person(s)—ethnography, narrative analysis, case studies, biography ● Implicated actors ● “Internal confidentiality” (Tolich 2004; Rosenblatt 1995) ● Open-ended research process and product ● Authenticity of the research report

30 “Off the Mark,” William Kornblum Qualitative Sociology 31(2) p. 196, Review of Sudhir Venkatesh, Off the Books: The Underground Economy of the Urban Poor Too much fictionalizing of a neighborhood or community risks making a real place into a “nowhere.” One then has the freedom to make assertions about its people without fear that anyone may offer contradicting evidence. I am sure this was not Sudhir Venkatesh’s intention, but the problem does become significant.

31 “Reply to Critics,” Sudhir Venkatesh Qualitative Sociology 31(2) p. 202 The characters in study are real beings who live in Chicago, but they are embodiments of institutionalized social roles. For this epistemological reason, and because of the pragmatic promise I made to them (and to my university’s Institutional Review Board) to protect their anonymity, I altered the names of individuals and locations. Kornblum misperceives these choices for “fictionalizing.”.

32 Reply from Venkatesh (cont.) Reply from Venkatesh (cont.) The neighborhood is real and I take care to specify the wider region, located in Chicago’s Southside (Greater Grand Boulevard), in which Maquis Park is situated. It would not be hard to find demographic information on Chicago’s Southside. More important, however, contemporary ethnographers seem to conflate the use of real names with accountability and a proper adherence to the scientific enterprise.

33 Representation, anonymity, and ethics in writing an ethnographic story W Morality wars were waged between various professional contingents and played out in patients’ lives. Most nurses imposed behavioral standards concerning sexuality, drinking, and cleanliness, although a few winked and walked away. The physical therapists claimed the moral high ground on assessments of patient independence. They battled social workers to gain early discharge dates by raising the specter of patients’ losing moral fiber and, subsequently, becoming institutionalized.

34 Remaining at the center after reaching their therapists’ notion of maximum improvement would surely result in all the deleterious effects of institutionalization. The head social worker said to me in disgust, “The physical therapists think only God and they know when patients should be discharged.”

35 The chief business administrator, Mr. Darby, fought with the head nurse, Miss Flora, over treatment plans, programs, and institutional policies—over everything. He even once told me, “Miss Flora won’t ever change. The only way to get rid of a nurse like that is through retirement.”

36 …. Mr. Darby told me that it took him a decade to persuade Miss Flora to stop coming back to the center on her Saturday nights off. Stories abounded of those days, or, rather, nights, when Miss Flora returned. She was said to hide next to the storage cabinet down the dark corridor near the backdoor, the better to nab miscreants about to sneak to the liquor store a mile down the road. (pp ) ________ Charmaz, Sociological Perspectives 43:

37 Although Miss Flora’s midnight visits had ceased, her attention to misbehavior had not. At Monday staff meetings she announced her weekend bottle count taken from the garbage cans. Miss Flora not only testified to the broken rules but also supported her conviction that Mr. Darby failed to run a proper institution. And so it went.

38 Goals of knowledge are not the same as those of human subjects review boards Goals of knowledge are not the same as those of human subjects review boards Goals of ethics may differ from goals of knowledge and from review boards Goals of ethics may differ from goals of knowledge and from review boards AND NOW CONSIDER Goals of knowledge for certain studies are interwoven with service provision Goals of knowledge for certain studies are interwoven with service provision Recall my starting premises

39 Hilary Brown and David Thompson (1997)-- The ethics of research with men who have learning disabilities and abusive sexual behaviour: a minefield in a vacuum Could these men give informed consent as research subjects? Vulnerable population with intellectual impairment—Would they understand that they could incriminate themselves? Vulnerable population with intellectual impairment—Would they understand that they could incriminate themselves? Unequal relationship with service providers who ask them to participate in research they might not understand Unequal relationship with service providers who ask them to participate in research they might not understand

40 Brown and Thompson (cont.) Brown and Thompson (cont.) Conflicting interests with other potential stakeholders and beneficiaries Conflicting interests with other potential stakeholders and beneficiaries –Other people with learning disabilities—often their victims –Care workers (accountable for the men’s behavior?) –Members of the public who may become their victims –Entire service system—its efforts to represent all people with learning/developmental disabilities as valued community members (see p. 698)

41 Creating multi-level solutions Individual actions Individual actions Organizational efforts Organizational efforts Involvement in empirical research Involvement in empirical research

42 Rosenblatt concludes: Rosenblatt concludes: There is much more to doing ethical research than applying…ethical principles. I do not think there is a trustworthy ethical formula that one can bring to a qualitative research interview. If anything, one must be open to co-constructing a set of ethical guidelines as the interview unfolds. (1995, p. 155)

43 In short, emergent ethics!

44 A final word-- Thank you for your attention Thank you for your attention Enjoy the Festival!


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