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Review of Aboriginal and Torres Strait Islander research ethics guidelines submission

ID: 
24
This submission reflects the views of
Organisation Name: 
RMIT University
Personal Details
Specific Questions
Question 1: 
We welcome the broadening of the scope of these guidelines to all research disciplines. However, some of the feedback from the research community is that the guidelines require further revision to ensure they will be understood, relevant and applicable to all disciplines. In particular, the guidelines and information provided on intellectual property (IP) and research agreements (discussed further below) requires further consideration and review. The provisions in the guidelines appear to go beyond the scope of ethics guidelines by mandating ethical and/or governance requirements that do not appear in the NS. In this regard, it was noted that some of the language used is very legalistic. Feedback from our research community also pointed to inconsistencies and duplication between the guidelines and the NS. For example: • Requirements in ‘Demonstrating respect’ (p.16 of Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities: Guidelines for researchers and stakeholders (Guidelines)) to promote cultural awareness and manage risk related to cultural difference and diversity, are broader in scope than the NS. • The information on consent (KROT p.9), which provides the option of participants ‘withholding consent’ does not align with the NS, which provides the options to ‘consent’, ‘not consent’ or to ‘withdraw consent’. • Both guidelines duplicate information about consent that is provided in the NS and that applies to all research participants (for example in Guidelines p.7 ‘Related Principles’). We suggest the guidelines include links to the NS but only provide information that enhances the general requirements for consent in the NS. • The Guidelines (p.18) state that Responsibility is reflected through ‘inflicting no harm’, whereas the NS requires an assessment of the risk and benefits of research and consideration of whether the potential benefits justify any potential risks. • The Guidelines (p.18) regarding demonstrating Responsibility refer to ‘evidence of an endorsed agreement’, researchers negotiating IP with institutions, copyright and joint sign off. The language used in these provisions is very legalistic, does not link to NS requirements and may not be culturally appropriate or practical in some settings. • Similarly, the need for ‘a negotiated formal agreement’ (Guidelines p.8) indicates a requirement to have a written agreement or ‘contract’, which may not be culturally appropriate or practical in some settings. • The list of points that a research agreement should cover (KROT p.11) is lengthy and there is some duplication of the NS guidelines on consent (i.e. HREC contact details, counselling information, withdrawal from the research project etc.), while other points may be more appropriately covered in a Research Agreement between the researcher and the institution. For example, at RMIT we provide researchers with a clause on cultural knowledge to include in Research Agreements. We would suggest the ethics guidelines outline what could be covered and provide more advice on the form any agreements could take and how to negotiate them. We welcome moves to streamline and focus the guidelines, including providing background information on the development of the guidelines and resources on the website rather than within the guidelines themselves. The guidelines could be further streamlined by providing links to the various sources of information rather than duplicating them. For example: • Linking to the relevant parts of the NS, rather than duplicating the content (Guidelines, p7 and p11-19). • When discussing how Cultural Continuity is reflected through understanding experiences of research as an exploitative exercise (Guidelines p. 12, first dot point), linking to the introductory historical context information on the website. • Revising the information on the core values in the Guidelines document to be more concise. In this regard we noted that the descriptions of the core values provided in KROT (p.10) are concise and appropriate.
Question 2: 
We welcome the inclusion of guidance around IP, but are concerned about the type of and way in which this information is provided. That is, the information is presented in a very legalistic tone for a guidelines document, making the requirements appear mandatory (which does not fit with the nature of the document). Additionally, the information presented does not equip people to demonstrate the core values, to facilitate an agreement, or to manage IP cooperatively. For example, the statement on IP (Guidelines p.9) fails to prioritise Aboriginal and Torres Strait Islander Peoples’ understandings of copyright, Intellectual property and ownership, to communicate the complexity and ambiguity in these terms, or to highlight the associated risks. We recommend that discussion about cultural and intellectual property rights be raised early in the research project, during relationship building and developing of the research idea. Guidelines on these steps could focus on developing a shared agreement and understanding of IP and associated rights and ownership, which can underpin later conversations on IP use. We suggest that the guidelines provide more advice on how to negotiate IP and direct people to other useful resources. In Step 3: Developing the project and seeking agreement, the provisions for cultural and intellectual property could be stronger and be broadened to cover all research disciplines. For example: • Questions to ask the research team (KROT2 p. 24), suggests asking “Who owns the data?” To provide for protecting intellectual property, this section could include questions such as: “What do you consider data?” or “How do you plan to discuss and negotiate an agreement around intellectual property rights?” These questions may prompt conversations about how the researcher and potential participant conceive of ‘data’, ‘information’ or ‘cultural and intellectual property’. • Questions for the Aboriginal and Torres Strait Islander participants and communities (KROT2 p. 24-25) could include questions such as: “Do we understand what is considered data?”, “Do we understand who owns the data?” and “Do we understand who owns the information we will be sharing in this study?” The statement in Demonstrating responsibility (Guidelines p. 18) to ‘Give Aboriginal and Torres Strait Islander contributors the opportunity to share in any intellectual property rights over information provided by them for the research project’ implies that researchers (and responsible institutions) could claim a share of the knowledge provided by Aboriginal and Torres Strait Islander contributors. We ask that this statement clarify that under Indigenous Cultural and Intellectual Property Rights (ICIPR), Aboriginal and Torres Strait Islander contributors own the IP rights of information provided by them for the research project.
Question 3: 
We would welcome a case study or scenario evidencing the potential for misunderstandings around what sort of information/data might be considered cultural or intellectual property, highlighting the risks associated with the different understandings of intellectual property held by Aboriginal and Torres Strait Islander Peoples, and researchers. Other useful topics for case studies suggested include: • Creative practice research disciplines, in line with the broadening of the guidelines to speak to research across all disciplines; • How to develop and negotiate a research agreement, in particular clarifying what work can occur prior to gaining ethics approval, and how to move from relationship building and developing the research idea to formalising the work. • Appropriate ways of gaining and documenting oral consent.
Supporting attachments

Page reviewed: 2 August, 2018