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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Current Perspectives on Research Ethics in Qualitative Research (Wolff-Michael Roth, Hella von Unger | 2018)0

Posted by Admin in on October 4, 2018
 

Abstract

In this article, we provide a brief introduction to the special issue on research ethics in qualitative research. We describe the general context within which our idea emerged to organize a special issue and present its design and, for purposes of transparency, some particulars with respect to the selection and review process. We sketch some of the common themes that are shared across parts of the paper set, including critical analysis of ethics codes and ethics reviews, the intricacies of informed consent, confidentiality and anonymity in qualitative research and questions of vulnerability.

Keywords
anonymity; confidentiality; ethics codes; ethics reviews; informed consent; knowledge/power; vulnerability

Roth, W., & von Unger, H. (2018). Current Perspectives on Research Ethics in Qualitative Research. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 19(3). doi:http://dx.doi.org/10.17169/fqs-19.3.3155
Publisher (Open Access): http://www.qualitative-research.net/index.php/fqs/article/view/3155

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Research ethics versus ethical approval: A response to Tomaselli (Papers: Katie Fitzpatrick | 2017)0

Posted by Admin in on September 27, 2018
 

Keyan Tomaselli’s opinion piece provides a great deal of food for thought about a wide range of issues in research. I want to pick up here on one point he makes, which I think is worth further consideration: the issue of research ethics and approvals in ethnography. He notes that “bio-medical ethical models are imposed on anthropologists” and he raises concerns about how universities engage in the gate keeping of research approvals. This is an important point and one that might usefully be explored further in future issues of this journal. It seems to me that ethical approval has, indeed, been divorced from the academic field of research ethics, especially in qualitative research. As Tomaselli notes, we might question the right of “organisations [to] claim jurisdiction over the right of adult individuals or researchers to make their own respective choices”. I think we might also seek to uphold the rights of young people—not only adults—to make decisions about the kinds of research they engage in and how their voices are represented therein.

Ethical issues in ethnographic research are, indeed, complex, locally and culturally specific, and are difficult to regulate. Part of this difficulty lies in the fact that ethnographic research is, by definition, relational. Romero and Walker (2010, 209) observe that “some of the most prevalent methodological and ethical questions in contemporary ethnographic research concern whose voice is heard and how it is represented”. They note that “in theory and in practice, Institutional Review Boards require that the identity of individuals be protected and remain anonymous or at very least confidential” [sic] (223). Many ethnographers adhere to this approach because they are committed to protecting the identities of their participants, especially when the research concerns personal, legal, sexual or other sensitive materials. However, an assumption that people’s identities should and will be obscured in research representations is also problematic, especially when this decision is made prior to even entering the field.

Fitzpartrick, Katie. 2017. “ Research ethics versus ethical approval: A response to Tomaselli.” The Ethnograhic Edge  1, (1): 21– 33. http://dx.doi.org/10.14663/tee.v1i1.20
Publisher: http://dx.doi.org/10.14663/tee.v1i1.20

‘Telling our story… Creating our own history’: caregivers’ reasons for participating in an Australian longitudinal study of Indigenous children (Papers: Katherine Ann Thurber, et al | 2018)0

Posted by Admin in on September 20, 2018
 

Abstract
Background
Improving the wellbeing of Indigenous populations is an international priority. Robust research conducted with Aboriginal and Torres Strait Islander peoples is key to developing programs and policies to improve health and wellbeing. This paper aims to quantify the extent of participation in a national longitudinal study of Aboriginal and Torres Strait Islander (Indigenous Australian) children, and to understand the reasons why caregivers participate in the study.

Methods
This mixed methods study uses data from Wave 6 of Footprints in Time, the Longitudinal Study of Indigenous Children. We conducted descriptive analysis of quantitative variables to characterise the sample and retention rates. We applied conventional content analysis to 160 caregivers’ open-ended responses to the question, ‘Why do you stay in the study?’, identifying themes and overarching meta-themes.

Results
The study has maintained a high retention rate, with 70.4% (n = 1239/1671) of the baseline sample participating in the study’s 6th wave. We identified seven themes related to why participants stay in the study: telling our story, community benefit, satisfaction, tracking Study Child’s progress, study processes, receiving study gifts, and valuing what the study stands for. These related to two meta-themes: reciprocity, and trust and connection. Caregivers reported that participation was associated with benefits for their family and community as well as for the study. They identified specific features of the Footprints in Time study design that built and maintained trust and connection between participants and the study.

Conclusions
Our findings support the assertion that Aboriginal and Torres Strait Islander people want to be involved in research when it is done ‘the right way’. Footprints in Time has successfully recruited and retained the current-largest cohort of Aboriginal and Torres Strait Islander children in Australia through the use of participatory research methodologies, suggesting effective study implementation and processes. Participants indicated ongoing commitment to the study resulting from perceptions of reciprocity and development of trust in the study. Footprints in Time can serve as a successful model of Aboriginal and Torres Strait Islander health research, to promote good research practice and provides lessons for research with other Indigenous populations.

Keywords
Indigenous population, Longitudinal studies, Research design, Trust, Ethics, Motivation

Thurber, K. A., et al. (2018). “‘Telling our story… Creating our own history’: caregivers’ reasons for participating in an Australian longitudinal study of Indigenous children.” International Journal for Equity in Health 17(1): 143.
Publisher (Open Access):  https://link.springer.com/article/10.1186/s12939-018-0858-1

Indigenous Data Sovereignty: University Institutional Review Board Policies and Guidelines and Research with American Indian and Alaska Native Communities (Papers: Tennille L. Marley | 2018)0

Posted by Admin in on September 16, 2018
 

Abstract
American Indians, Alaska Native, and other Indigenous people throughout the world have undergone and continue to experience research abuses. Qualitative data such as intellectual property, Indigenous knowledge, interviews, cultural expressions including songs, oral histories/stories, ceremonies, dances, and other texts, images, and recordings are at risk of exploitation, appropriation, theft, and misrepresentation and threaten the cultural sovereignty of American Indians, Alaska Native, and other Indigenous people. These issues are potentially magnified with the increasing use of big data. Partly as a result of past and current research abuse, the Indigenous data sovereignty, the control, ownership, and governance of research and data, is growing. In this article, I discuss American Indian political sovereignty, cultural sovereignty, and Indigenous data sovereignty, with an emphasis on qualitative data sovereignty. In addition, I explore whether Arizona’s public universities—Northern Arizona University, Arizona State University, and University of Arizona—policies and guidelines support Indigenous data sovereignty and the extent to which they align with the Arizona Board of Regent’s tribal consultation policy that governs relations between the three Arizona universities and Arizona American Indian nations. Overall expectations, requirements, and processes do not go far enough in supporting Indigenous data sovereignty. Although each university has specific research policies that follow the Arizona Board of Regent’s tribal consultation policy, the university guidelines differ in scope in term of supporting Indigenous data sovereignty. In addition, none of the policies address qualitative data sharing, including those in big data sets. Based on the findings I make several recommendations for researchers, including supporting the Indigenous sovereignty movement and to reconsider big data use and past positions about qualitative data ownership and sharing with regard to American Indians, Alaska Native, and other Indigenous people.

Keywords Indigenous data sovereignty, American Indian and Alaska Native, Indigenous people, qualitative data

Marley, T. L. “Indigenous Data Sovereignty: University Institutional Review Board Policies and Guidelines and Research with American Indian and Alaska Native Communities.” American Behavioral Scientist 0(0): 0002764218799130.
Publisher: http://journals.sagepub.com/doi/abs/10.1177/0002764218799130#articleCitationDownloadContainer

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