NHMRC Public Consultations

Skip Navigation and go to Content
Visit NHMRC website

Review of Aboriginal and Torres Strait Islander research ethics guidelines submission

ID: 
29
This submission reflects the views of
Organisation Name: 
The Australian National University
Personal Details
Specific Questions
Question 1: 
The draft guidelines are useful and, overall, wisely worded additions to the advice NHMRC and AIATSIS provide in the context of health and medical research, extending the approach that these disciplines currently undertake when working with ATSI peoples to a broader research landscape. ANU has a significant number of scale research projects relevant to the consultation and a long history of Indigenous and non-Indigenous researchers undertaking research. Consultation within our institution suggests that comprehensive adoption of the guidelines as they stand would make much non-medical and health research more difficult. In particular, the proposed expectations around free, prior and informed consent; the requirement for formal agreements; the requirement that all agreements are to be mediated through a strongly-identified ‘community’; and the requirement to ensure that the benefits of research are fairly distributed all impose conditions that may not be strictly met if too narrow an interpretation were made. Notwithstanding this statement, the principles underpinning what are stated as requirements may be honoured if the conditions were made more flexible in the context of broadly agreed or consensus models rather than more formal, binding restrictions. Research in the humanities and social sciences is often conducted with individuals or families, and thus the focus on community level engagement may not sufficiently cover the scope of research for which the guidance intends coverage. Conversely, most medical research would not be conducted with just a single person (for reasons of experimental design), so the issue of dealing with individuals rather than communities does not arise. The draft guidelines require the free, prior and informed consent of the whole ‘community’ and its ‘institutions’. Anyone who has worked with Indigenous communities knows that they are, like all communities, complex and often fractured. There are clans, extended families, tribes, language groups, nations, discrete communities, dispersed communities of interest. There are also over 8,000 Indigenous organisations. There are also individual Indigenous people engaged in research. In the case of linguistic research, for example, there may be just one person who speaks a language and a linguist might negotiate just with them, or them and their family, but not necessarily a whole community – since it sometimes happens that an individual is a sort of uncomfortable minority in a community and has been disenfranchised by that group. To require these individuals and non-Indigenous researchers to have to seek the formal approval of the ‘community’ is unworkable, even when the community can be identified. Indeed, it threatens to undermine Indigenous individual rights. The use of the term ‘community’ through the document needs to be reconsidered. A potential reframing of ‘community’ might better be in the context of seeking engagement at an appropriate level that depends on the scope and nature of the research. A requirement for engagement rather than a more narrowly framed community-based requirement would still fulfill the National Statement’s principle of respect, and that engagement should still reflect – irrespective of its scope – cognisance of the other principles of reciprocity and cultural continuity insofar as these can apply in the circumstances. We would welcome the opportunity to review a revised document that addresses the concerns raised above before it is finalised.
General comments
Comments: 

• The need for feedback through the whole research process should be emphasised
• The need to take time in the consultation process needs to be emphasised
• The role of a mentor should be added in to the ethical conduct document it is not mentioned. The role of an HREC should consider the need for experienced mentoring and supervision.

Page reviewed: 2 August, 2018