Genetic research in Aboriginal and Torres Strait Islander communities : continuing the conversation

Genetics is at the forefront of medical research, but it is rarely used in Indigenous health research projects. This discussion paper is the outcome of the first ever national discussion of the conduct of genetic research in Indigenous communities in Australia convened by the Lowitja Institute in 2010. It reviews the ethical issues relevant to genetic research in an Australian Indigenous context; existing guidelines for genetic research in indigenous communities internationally; and literature on genetic literacy in Indigenous contexts. Finally, the discussion paper presents a summary of the productive and challenging conversations at the round table.

Reflections on doing inclusive research in the 'making life good in the community' study

BACKGROUND: The involvement of people with intellectual disability in research is framed as inclusive, denoting their active participation in its processes. However, questions are raised about ownership and control, genuineness of involvement, and the need for honest accounts to develop practice. Such issues are particularly pressing in Australia, where there is the absence of a strong self-advocacy movement to partner with academics or hold them to account. METHOD: Action research was used to reflect on and progressively refine the support provided by a research mentor to a co-researcher with intellectual disability employed on a large multimethod study. RESULTS AND CONCLUSIONS: Accepting the co-researcher's strengths and designing support on the job rather than teaching them to "pass" before venturing out in the field are important in ceding control. Support required for a co-researcher is more than practical and involves developing a relationship that can actively challenge views and foster reflection. Ownership of questions and disseminating of outcomes are hampered by contextual factors such as tender processes, short-term positions, and a failure to acknowledge the support required to present findings.

Space, place and race: Ethics in practice for educational research in ethnically diverse rural Australia

Research in Australia’s ethnically diverse rural and regional communities requires an approach that is informed by notions of space, place and culture, and which recognises race as a relational social construct mediated by social and political discourse and context, and prone to change overtime. This critical review examines how teacher education researchers connect culturally competent research and rural ethics with the view to improving education systems, addressing rural teacher workforce issues, informing the preparation of pre-service teachers, and, most importantly, ensuring that rural students have access to educational opportunities that are engaging and meet their needs. It focuses specifically on researcher positionality on the insider-outsider continuum and how this informs ethical research in diverse rural communities, particularly those in which visible new migrants reside. Peer-reviewed journal articles that discuss how education researchers negotiate working in rural space are examined and considered in relation to discourse about ethics in practice and the insider/outsider continuum. Scholarship reflected in the literature spanned the fields of rural/research ethics, inclusive education, education research methodology and research with new migrants, minority and marginalised groups.

Oncology service initiatives and research in regional Australia

OBJECTIVE: This paper reflects on the recent growth of cancer research being conducted through some of Australia's rural centres. It encompasses work being done across the fields of clinical, translational and health services research. DESIGN: This is a collaborative piece with contributions from rural health researchers, clinical and cancer services staff from several different regions. CONCLUSION: The past decade has seen an expansion in cancer research in rural and regional Australia driven in part by the recognition that cancer patients in remote areas experience poorer outcomes than their metropolitan counterparts. This work has led to the development of more effective cancer networks and new models of care designed to meet the particular needs of the rural cancer patient. It is hoped that the growth of cancer research in regional centres will, in time, reduce the disparity between rural and urban communities and improve outcomes for cancer patients across both populations.

Action research in a remote district in Papua New Guinea: final report

This project investigated whether action research could be used to address ‘grassroots’ community problems in a remote district of PNG. The research team introduced, supported and researched the implementation of a pilot action research project from April to November 2015 in Abau, Central Province. The project was funded by the Australian Government and commissioned through the Economic and Public Sector Program (EPSP) managed by Coffey. The action research participants comprised people from throughout Abau with interests in women’s and gender equity issues from community groups and agencies in the district. The action research teams developed evidence-based understandings of the causes and consequences of the problems that they were addressing through their actions. The research team provided each participant with a mobile phone connected to a ‘common user group’ (CUG). This enabled each participant unlimited phone calls and SMS messaging to other participants and to the research team. The research team sent weekly sets of SMS messages to all participants to assist their action research work. The use of mobile phones to support action research in remote communities was an important element of both facilitating the action research and of the research on the pilot project itself. With such knowledge they were strengthened in purpose and intention to help their own community. This suggests that an extension of this work in other remote areas of PNG may be successful.