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The picture talk project: Aboriginal community input on consent for research (Papers: Emily FM Fitzpatrick, et al | 2019)0

Posted by Admin in on February 3, 2019
 

Abstract

Background
The consent and community engagement process for research with Indigenous communities is rarely evaluated. Research protocols are not always collaborative, inclusive or culturally respectful. If participants do not trust or understand the research, selection bias may occur in recruitment, affecting study results potentially denying participants the opportunity to provide more knowledge and greater understanding about their community. Poorly informed consent can also harm the individual participant and the community as a whole.

Methods
Invited by local Aboriginal community leaders of the Fitzroy Valley, the Kimberley, Western Australia, The Picture Talk project explores the consent process for research. Focus groups of Aboriginal community members were conducted to establish preferences for methods of seeking individual consent. Transcripts were analysed through NVivo10 Qualitative software using grounded theory with inductive and deductive coding. Themes were synthesised with quotes highlighted.

Results
Focus groups with Aboriginal community members (n = 6 focus groups of 3–7 participants) were facilitated by a Community Navigator as a cultural guide and interpreter and a researcher. Participants were recruited from all main language groups of the Fitzroy Valley – Gooniyandi, Walmajarri, Wangkatjungka, Bunuba and Nikinya. Participants were aged ≥18 years, with 5 female groups and one male group. Themes identified include: Reputation and trust is essential; The Community Navigator is key; Pictures give the words meaning – milli milli versus Pictures; Achieving consensus in circles; Signing for consent; and Research is needed in the Valley.

Conclusion
Aboriginal communities of the Fitzroy Valley recommend that researchers collaborate with local leaders, develop trust and foster a good reputation in the community prior to research. Local Aboriginal researchers should be employed to provide cultural guidance throughout the research process and interpret local languages especially for elders. Pictures are preferred to written text to explain research information and most prefer to sign for consent. The Fitzroy Valley welcomes research when collaborative and for the benefit of the community. Future research could include exploring how to support young people, promote health screening and improve understanding of medical knowledge.

Keywords
Research, Consent, Qualitative Methods, Aboriginal, Indigenous, Community, Focus Groups, Pictures, Yarning

Fitzpatrick EFM, Carter M, Oscar J, D’Antoine H, Carter M, Lawford T and Elliott EJ (2019) The picture talk project: Aboriginal community input on consent for research. BMC Medical Ethics (2019) 20:12 https://doi.org/10.1186/s12910-019-0349-y
Publisher (Open Access):  https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-019-0349-y

Why bioethics needs a concept of vulnerability (Papers: Wendy Rogers, et al | 2012)0

Posted by Admin in on November 30, 2018
 

Abstract
Concern for human vulnerability seems to be at the heart of bioethical inquiry, but the concept of vulnerability is under-theorized in the bioethical literature. The aim of this article is to show why bioethics needs an adequately theorized and nuanced conception of vulnerability. We first review approaches to vulnerability in research ethics and public health ethics, and show that the bioethical literature associates vulnerability with risk of harm and exploitation, and limited capacity for autonomy. We identify some of the challenges emerging from this literature: in particular, how to reconcile universal human vulnerability with a context-sensitive analysis of specific kinds and sources of vulnerability; and how to reconcile obligations to protect vulnerable persons with obligations to respect autonomy. We then briefly survey some of the theoretical resources available within the philosophical literature to address these challenges, and to assist in understanding the conceptual connections between vulnerability and related concepts such as harm, exploitation, needs, and autonomy. We also sketch out a taxonomy of sources and kinds of vulnerability. Finally, we consider the implications for policy evaluation of making vulnerability an explicit and central focus of bioethics. Our investigation is in the form of a broad survey motivating a research agenda rather than a detailed analysis.

Keywords
Bioethics, Disabilities, Child molestation, Feminism, Public health, Territories, Productivity, Research ethics. Morality, Informed consent

Rogers, W., Mackenzie, C., & Dodds, S. (2012). Why bioethics needs a concept of vulnerability. International Journal of Feminist Approaches to Bioethics, 5(2), 11-38. doi:10.2979/intjfemappbio.5.2.11
Publisher (PDF available with frre login): https://www.jstor.org/stable/10.2979/intjfemappbio.5.2.11?seq=1#metadata_info_tab_contents

Ethical relationships, ethical research in Aboriginal contexts: Perspectives from central Australia0

Posted by Admin in on November 18, 2018
 

Learning Communities International Journal of Learning in Social Contexts
Special issue: Ethical relationships, ethical research in Aboriginal contexts: Perspectives from central Australia

Number 23 – November 2018

CONTENTS
Introduction to Special Issue: Being here matters …2
Barry Judd

Editorial….12
Al Strangeways

“You helped us and now we’re going to all help you”: What we learned about how to do research together …16
Lisa Hall, Linda Anderson, Fiona Gibson, Mona Kantawara, Barbara Martin and Yamurna Oldfield

Ngapartji ngapartji ninti and koorliny karnya quoppa katitjin (Respectful and ethical research in central Australia and the south west) …32
Jennie Buchanan, Len Collard and Dave Palmer

Researching together: Reflections on ethical research in remote Aboriginal communities …52
Tessa Benveniste and Lorraine King

The dancing trope of cross-cultural language education policy…64
Janine Oldfield and Vincent Forrester

Different monsters: Traversing the uneasy dialectic of institutional and relational ethics …76
Al Strangeways and Lisa Papatraianou

Research for social impact and the contra-ethic of national frameworks…92
Judith Lovell Altyerre

NOW: Arrernte dreams for national reconstruction in the 21st century …106
Joel Liddle Perrurle and Barry Judd

The making of Monstrous Breaches: An ethical global visual narrative…116
Judith Lovell and Kathleen Kemarre Wallace

Read  the special edition

The ‘problem’ of undesigned relationality: Ethnographic fieldwork, dual roles and research ethics (Papers: Kirsten Bell | 2018)0

Posted by Admin in on October 28, 2018
 

Abstract

This October 2018 paper reflects on an area of research which continues to be a source of tension between at least some researchers* and research ethics reviewers: Is it a problem, or an advantage or in fact sometimes a necessity that there be an existing connection between participant and researcher. *Especially for ethnographers and anthropologists who might feel they are being held to a biomedical standard that is irrelevant and useless for their work. We have included links to a trove of related items in the Resource Library.

Perhaps the most unique feature of ethnographic fieldwork is the distinctive form of relationality it entails, where the ethnographer’s identity as a researcher is not fixed in the way typical of most other forms of research. In this paper, I explore how this ‘undesigned relationality’ is understood, both in procedural ethics frameworks and by the different disciplines that have come to claim a stake in the ‘method’ itself. Demonstrating that the ethical issues it entails are primarily conceptualized via the lens of the ‘dual role’, I use this as a means of exploring the ideal relationship between researcher and subject that procedural ethics frameworks are premised upon. I go on to explore the epistemological differences in ways that ethnographers themselves understand and respond to the multiple forms of relationality that characterize fieldwork and the challenge this poses to the possibility of a pan-disciplinary consensus on ethnographic research ethics.
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Keywords
ethnography, research ethics, dual roles, disciplinarity, relationality
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Bell, K. (2018). The ‘problem’ of undesigned relationality: Ethnographic fieldwork, dual roles and research ethics. Ethnography. https://doi.org/10.1177/1466138118807236