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Review of Aboriginal and Torres Strait Islander research ethics guidelines submission

ID: 
49
This submission reflects the views of
Organisation Name: 
The Picture Talk Project
Personal Details
Specific Questions
Question 1: 
The language has changed to generalise across many areas. However, on line 3 of page 4 of Keeping Research on Track II, other areas of research could include “environment”. This particular topic is important to include due to the strong spiritual connection with country including the rivers, deserts and other lands, which is held by Aboriginal and Torres Strait Islander people.
Question 2: 
Perhaps there could be some more information about patenting law and genetic research laws in both forms with examples of the most recent and relevant case law.
Question 3: 
3A. A case study about intellectual property should definitely be included. This will definitely help understanding of the regulations as of 2017. 3B. I am not familiar with the last few years of case studies. 3C. One example of another topic for a case study that would be useful for the NHMRC guidelines for research with Aboriginal and Torres Strait Islanders is the topic of: Aboriginal community engagement and seeking consent for research. 3D. The Picture Talk Project is an example of a case study that explores culturally appropriate ways of conducting community engagement and seeking consent for research with Aboriginal and Torres Strait Islander people (1,2,3). As part of this project, we conducted a systematic review that demonstrates that few studies reflect on the process of community engagement and seeking consent for research with Indigenous populations around the world (1). We evaluated international, national and local research guidelines and found that few organisations required researchers to provide the option of information for seeking consent for participation to be available in the participant's language of preference, have visual aids to help explain the research or have a local person have input on the material provided (1). Despite years of research with Indigenous people, they are still some of the most marginalised people in the world, which affects their health and wellbeing (4). For the purpose of this submission, the word 'Indigenous' is used for all Indigenous populations around the world, but one must note that when working with specific communities in Australia, people may wish to be referred to as Aboriginal, Torres Strait Islander or from the language group that they are from, for example Bunuba. The Picture Talk Project was invited by and conducted in partnership with local community leaders of the Kimberley. It is conducted in collaboration with the University of Sydney, and local Fitzroy Valley Aboriginal organisations, namely Marninwarntikura Women's Resource Centre, Nindilingarri Cultural Health Services and the Kimberley Aboriginal Law and Culture Centre. A logo was designed by local artists to assist with recruitment and community engagement was started through attending local meetings (2). Aboriginal community leaders and elders were interviewed and focus groups were held about the community engagement and consent process for research (2,3). Transcripts were analysed using NVivo10 qualitative software using grounded theory and inductive and deductive coding in an iterative process (2,3). Five key themes have been derived from the data- Research: Finding Knowledge; Respect for Aboriginal People, Working on Country, and being Flexible with Time; Working Together with Good Communication; Reciprocity: Two-Way Learning; and Reaching Consent (2,3). Once the first four values are upheld and respected, then the community is in a space to give consent for a project to go ahead (2,3). In remote communities, for projects that have the potential to affect the whole community, it is important that community consent/ or a community agreement is established first before individual consent may be obtained from participants (2,3). This project is an example of a culturally respectful collaborative project. It demonstrates this by having local Aboriginal leaders of key organisations share control, authorship and ownership of the project. Local interpreters were employed as Community Navigators used to work with each language group as well as men for men’s side and women for talking with the female participants. Aboriginal community leaders, local artists and Community navigators were also employed to join in releasing the results back to the communities and to international and national audiences in the form of publications and presentations (1,2,3). The Picture Talk Project recently put forward some recommendations during the National Rural Health Conference based on findings in the research (2,3). These are described as follows (3). Research protocols and ethical guidelines for research with remote Aboriginal communities should: 1. Require research funding bodies and external researchers to be responsive to the research needs identified by the communities (3). 2. Require external researchers to collaborate with a nominated representative of the Aboriginal community who holds local respect and has strong cultural knowledge. This Aboriginal research partner should inform the research project from the protocol design to completion of the project and delivery of results (3). 3. Require funding bodies to be more flexible in their timelines allowing for unexpected cultural obligations (3). On reviewing the current NHMRC revision of the Aboriginal and Torres Strait Islander Research Ethics Guidelines Submission, we have found that the new guidelines largely support the recommendations put forward by The Picture Talk Project and highlight similar values to the main themes (1,2,3). One particular point which is not emphasized in the current revised guidelines is that it was considered important for researchers who are not from the area to have sufficient cultural orientation and training before and during the period they are engaged with the community for research (2). It was also considered imperative by the communities of the Fitzroy Valley that community consent was obtained before individual consent was sought (2). Elders play a key role in the Fitzroy Valley community as ‘keepers of knowledge’ must be acknowledged during community-based projects. The elders often required an interpreter so that they may speak local language (2). When asked, people preferred to be identified by their language group for example “Bunuba” rather than “Aboriginal” (2). Our research through The Picture Talk Project has provided first hand evidence from meaningful accounts from elders, leaders and community members of the Fitzroy Valley to support the NHMRC guidelines (1,2,3). It sits as an example of a community-based project that is conducted in continuous collaboration with local Aboriginal organisations and their leaders. 1. Fitzpatrick EFM, Martiniuk ALC, D’Antoine H, Oscar J, Carter M, Elliott EJ. Seeking Consent for Research with Indigenous Communities: A Systematic Review. BMC Medical Ethics. 2016. 2. Fitzpatrick EFM, Macdonald G, Martiniuk ALC, D'Antoine H, Oscar J, Carter M, et al. The Picture Talk Project: Starting a Conversation with Community Leaders on Research with Remote Aboriginal Communities of Australia. BMC Med Ethics. 2017;18(1):34. 3. Fitzpatrick EFM, Oscar J, Carter M, Lawford T, Martiniuk AM, D’Antoine H, Elliott EJ Conducting research together with Remote Aboriginal Communities 14th National Rural Health Conference Proceedings. National Rural Health Alliance. Ed: Leanne Coleman, Canberra, ACT, Australia, 2017 http://www.ruralhealth.org.au/14nrhc/program/concurrent-speakers (accessed June 6 2017) 4. UN. State of the World's Indigenous Peoples. United Nations Division for Social Policy and Development of the Department of Economic and Social Affairs; 2015.
General comments
Comments: 

It would be nice to have the author of the art on the front page acknowledged and their background.

Page reviewed: 2 August, 2018