ࡱ> monw9( `/ 0DTimes New Romantt(U 0DArialNew Romantt(U 0"@ .  @n?" dd@  @@`` /i       0AA 333MMMfff@MMM"ʚ;ʚ; g4rdrd yU 0p`p@ <4!d!d@w 0tU<4dddd@w 0tU<4BdBd@w 0tU80___PPT10 pp? %3:Analysis of Research Ethics and the Ethical Review Process[Maureen H. Fitzgerald, PhD School of Occupation & Leisure Sciences The University of Sydney\A Secret Ethics Committee Business !  Looking Inside the Black Box    Stakeholders/Perspectives  Government  Community However community is defined Research participants Or whatever they are called Researchers The institution University, medical centre, area health service, school, etc. Funders Government, private organisations, industry>,>  ,   We are not the ethics police$Purpose of the committee observations To learn and understand To look inside the black box Attitudes towards observation of meetings Please do, want you to observe, we would like to learn too You are evaluating us, trying to see what we are doing wrong You are evaluating us, tell us what we can do better We are not the ethics police. We are researchers engaged in research on a human (and cultural) phenomenon.b&5*l 2&5* )Inside out, Outside in, Inside outside in * Observations of committee proceedings n=32 22 observed (12 Australia, 3 New Zealand, 7 USA) 3 cancelled (1 New Zealand, 2 USA) 4 refusals (Australia) 2 missed (Canada) for logistical reasons 1 scheduled or approved but not observed@&&     2Formal interviews/discussions By number of people n=126, researchers (experienced, students), committee chairs, admin officers, members, policy makers Australia = 52, Britain = 1, Canada = 12, New Zealand = 16, USA = 45 Face-to-face, telephone, email Length H" 30 minutes to 4 hoursxeE>eE  &      Informal interviews Researchers Committee members Others Everyday talk (informal interviews) with everyday people Taxi cab and shuttle van drivers Friends, family, and acquaintances Strangers encountered in everyday life:^k^k    The published literature from a variety of fields Application forms and related documents Personal experiences Consultations with community members in preparation for projects (e.g., Cambodian Women s Project) Discussion as part of research projects Projects I have been involved with Student projects Colleagues projects@oZZHZoH(Y   Why now?JEthics comes into its own in situations of ambiguity and uncertainty, particularly where there appears to be a conflict of values. In our century with unprecedented growth in knowledge, communication and technology, there have been plenty of these. Hence the burgeoning interest in ethics, especially over the last fifty years. KJ+Interest in Research Ethics Waxes and WanesAt a height post-WWII Then crises or static occur and it peaks again  Punctuated equilibrium In anthropology the heights were in late 1970s-early 1980s, early-mid 1990s (1992-1994), early 2000s.Ethics as Moral StandardEAn ethical theory provides an ordered set of moral standards (in some cases, simply one ultimate moral principle) that is to be used in assessing what is morally right and what is morally wrong regarding human action in general. An ethical theory, in this sense, is theory of moral obligation. (Mappes & Zembatty, 1991, p. 4)LFX```bB,'Ethical JudgmentsEthical judgments are value judgments So perceptions of risk and benefits can vary greatly from person to person (Whitley, 1996, p. 178)*qqConcept of Ethics  xReasoning tool to develop knowledge about the  right way to behave to decide what is to be done (or not done) given any particular set of circumstances to reason about what  ought to be 4     Ethics are  eAn extraordinarily complex cultural phenomenon (Weisz, 1990) It is Cultural process Cultural product`0". "  &1  0 Cultural Assumptions  Nature of knowledge How to obtain knowledge Universalism Personhood and the individualised self Decision making Advised consent etc  Ethical Ethnocentrism  y My beliefs differ from yours, therefore you are unethical. (Cassell & Jacobs, 1987, p. 1, emphasis in the original) ^?:*   8"&@  3 -Culture and Cultural Process Some Assumptions . ethics as culture the review process as a cultural and culturally constituted and guided process judgements as culturally influenced and biased     Does the ethical review process lead to more ethically responsible research? Can this study lead to more ethically responsible research through greater understanding of the process as a cultural process?RefugeesWhat cultural assumptions come into the review process? Do committees possess the kind of knowledge required to judge the ethical issues? Do researchers? Lack of homogeneity in refugee populations even when they share similar origins Transfer of standards for one context to anotherZCross-cultural Research Ethics  Universalism vs relativism Are research ethics local? (Christakis, 1992) Cultural sensitivity  is this different from relativism? Can there a set of universally acceptable standards? Should there be? Capacity for ethical review Ethical imperialism Great need for attention to this in this age of globalisation and international research  not just that related to refugeesP&   h Ethical Imperialism   The coercive and inappropriate imposition of Western morality (Newton, 1990, p. 10) Is there an universal ethics? Do the principles translate cross-culturally? Should the demands of some (i.e., Western) countries take precedence over others? What should happen when there is conflicting expectations? Is this just another form of colonialism?YZY Y Cultural Comprehension  Ethical principles and procedures Informed consent Comprehension of the idea of informed consent in societies that are not individualistic Problems of translation Conceptual Core terms and ideas When topics emerge from the fieldwork experienceV3p 13p 1  Thank you to all the people who so generously share their time, experiences, knowledge and thoughts. To Elisa and Paul, thank you for your assistance.f2(    ReferencesnCassell, J., & Jacobs, S.-E. (1987). Introduction. In J. Cassell & S.-E. Jacobs (Eds.), Handbook on ethical issues in anthropology (pp. 1-3). Washington, DC: American Anthropological Association. Christakis, N. A. (1992). Ethics are local: Engaging cross-cultural variation in the ethics for clinical research. Social Science & Medicine, 35(9), 1079-1091. Dunne, R. M., Sister. (2000). Biotechnology: Ethical issues for the community. Paper presented at the Conference of Health Administrators, Brisbane, Queensland. Fitzgerald, M. H., & Yule, E. (2004). Open and closed committees. Monash Bioethics Review, 23(4), 35-49. voX* 62"! OGillam, L. (2003). Secret ethics business? Monash Bioethics Review, 22(1), 52-62. Mappes, T. A., & Zembaty, J. S. (1991). Biomedical ethics and ethical theory. In T. A. Mappes & J. S. Zembaty (Eds.), Biomedical ethics (3rd ed., pp. 1-44). New York: McGraw-Hill. Newton, L. H. (1990). Ethical imperialism and informed consent. IRB, 12(3), 10-11. Weisz, G. (1990). Introduction. In G. Weisz (Ed.), Social science perspectives on medical ethics (pp. 3-15). Dordrecht: Kluwer Academic Publishers. Whitley, B. E. (1996). Principles of research in behavioral science. Mountain View, CA: Mayfield.P+m@-K,%! ? !Mx   0` ` ̙33` 333MMM` ff3333f` f` f` 3>?" dd@,|?" dd@   " @ ` n?" dd@   @@``PR    @ ` ` p>> g_(  .   BCHDE@F"3fv @3fwH3Hsoc3{HGH=wH@     `"PO   6DU "P U T Click to edit Master title style! !$  00U " U RClick to edit Master text styles Second level Third level Fourth level Fifth level!     S  0xU "`` U >*  0+U "`  U [Maureen H. Fitzgerald, PhD$"  0U "`  U @*B  s *3f޽h ? f33 My Blueo 0  (  x  c $HzUp U x  c $tU `   U w  0L w Fitzgerald, M. H. (2004, 22-23 June). Analysis of research ethics and the ethical review process. 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Fitzgerald@C:\Program Files\Microsoft Office\Templates\maureen\My Blue.potMaureen Fitzgerald6Microsoft PowerPoint@PyJ @pU@Z:GP;g    y3f--$xx--'&&-/_--$44--0`--$44--1b--$44--2e--$44--3g--$ 4 4--5k--$  4 4  --7o--$  4 4  --9s--$  4 4  --4>4==--0a--$>?4?4>>--/_--$?@4@4??---&&&--&&- && &~$= @ @?>=;96$1'/)-,,.*/)0(1'1'1'0'/(-)**(+'+&+%*$)$(#&###!###" " "!!    $&(,0 4 7 ; = ? @ @& &&-~$= @ @?>=;96$1'/)-,,.*/)0(1'1'1'0'/(-)**(+'+&+%*$)$(#&###!###" " "!!    $&(,0 4 7 ; = ? @ @-&&&&&-&&&TNPP-/_--$44--0`--$44--1b--$44--2e--$44--3g--$ 4 4--5k--$  4 4  --7o--$  4 4  --9s--$  4 4  --4>4==--0a--$>?4?4>>--/_--$?@4@4??--- '&&TNPP'3f--%? @ @?>=;95$1'/)-++-*/)0(0'0'0'0'.(,)**(+'+&+%*$)$(#&#$#!##""" " "!!     #&(,0 4 7 ; = > ? @ @--'@Times New Roman-.  2 q<."SystemȌ-@Times New Roman-. .2 q>Maureen H. Fitzgerald, PhD.-@Times New Roman-. 12 1Analysis of Research Ethics .. 12 0Analysis of Research Ethics .-@Times New Roman-. 42 =and the Ethical Review Process.. 42 <and the Ethical Review Process.-@Times New Roman-. .2 L&Maureen H. Fitzgerald, PhD.. .2 K%Maureen H. Fitzgerald, PhD.-@Times New Roman-. B2 U#'School of Occupation & Leisure Sciences.. B2 T"'School of Occupation & Leisure Sciences.-@Times New Roman-. +2 ]5The University of Sydney.. +2 \4The University of Sydney.-@Times New Roman-. 02 bFitzgerald, M. H. (2004, 22e.-@Times New Roman-.  2 b?-.-@Times New Roman-. F2 bA*23 June). Analysis of research ethics and .-@Times New Roman-. .2 gthe ethical review process.-@Times New Roman-.  2 g=..-@Times New Roman-. *2 g?Paper presented at the y.-@Times New Roman-. "2 ggEthics of refugee .-@Times New Roman-. @2 m&research: Dilemmas and solutions Forum.-@Times New Roman-. 2 mX , Sydney. .-՜.+,0    On-screen ShowUniversity of Sydney Times New RomanArialMy Blue;Analysis of Research Ethics and the Ethical Review Process!Secret Ethics Committee BusinessLooking Inside the Black Box Stakeholders/PerspectivesWe are not the ethics police*Inside out, Outside in, Inside outside inSlide 7Slide 8Slide 9 Why now?,Interest in Research Ethics Waxes and WanesEthics as Moral StandardEthical JudgmentsConcept of Ethics Ethics areCultural AssumptionsEthical Ethnocentrism.Culture and Cultural Process Some Assumptions Slide 19 RefugeesCross-cultural Research EthicsEthical ImperialismCultural ComprehensionThank you to all the people who so generously share their time, experiences, knowledge and thoughts. To Elisa and Paul, thank you for your assistance. 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