Professor Ian Anderson

1. Regulating ethics and Aboriginal Health Research An Indigenous Paradigm Professor Ian Anderson Centre for Health & Society & Onemda VicHealth Koori Health Unit, Melbourne School of Population Health Cooperative Research Centre for Aboriginal Health

2. Protocol Uncle Kevin Coombs OAM Onemda is a Woiwurrung word for spirit, well-being & love Aunty Joy Murphy-Wandin Aunty Joan Vickery OA

3. Indigenous Australia Bay of Fires

4. Bay of Fires: April 2008 Palawa Trowerna: Pyemairrenner - Trawlwoolway & Plairmairrenner and related Clans

5. Bay of Fires: April 2008

6. Overview • A regulatory framework for an ethical research engagement with Indigenous Australians • Key Concepts • Regulation of research ethics in Australia • Research, Ethics and Rights • Values and Ethics

7. Key Concepts • Ethical relationships within the research process with Indigenous peoples can be framed as ones which are based on: • Mutual recognition • Political engagement that recognises and respects Indigenous social and political processes (Durie: ethics of empowerment) • Mutual comprehension • Social engagement that recognises and respects Indigenous values (Durie: ethics of engagement) • Reconciliation and/or De-colonisation • A trust based engagement based on mutual recognition and comprehension towards a shared goal or vision

8. Regulation of research ethics in in Australia • National Health and Medical Research Council • A Principal committee - The Australian Health Ethics Committee (AHEC) – is established under the NHMRC Act 1992. • AHEC functions to advise the NHMRC on ethical issues relating to health and develop guidelines for the conduct of research involving humans. • The National Statement on Ethical Conduct in Human Research (2007) (National Statement) consists of a series of primary guidelines for researchers, Human Research Ethics Committees (HRECs) and research organisations.

9. Regulation of research ethics in in Australia • Human Research Ethics Committees • Review research proposals involving human participants to ensure that they comply with ethical standards and guidelines • National Statement sets out guidelines for the composition of HRECs • There are over 200 registered HRECs • HREC operation primarily an institutional responsibility - AHEC plays a monitoring role through an HREC annual report

10. Campaign Poster 1967 Referendum • Political movement focus shifted from formal equality to a set of political values framed by substantive equality and/or Indigenous rights • Indigenous rights - a set of rights contextualised by the status of Indigenous peoples as colonised peoples – where our colonial status (“citizenship”) is integrated within the settler state • Political values include: • Sovereignty • Land Rights, Native Title • Self-determination • Community Control

11. Indigenous Health Research Ethics & Rights • Self-Determination: A Legal & Policy construct • “Universal Right” – protection from tyranny. Indigenous people’s self-determination – recognises the survival of an Indigenous “social polity’ within the legal and social framework of the settler state • Various manifestations: consultation, participatory policy, institutional structures, Indigenous managed services; local self government; regional autonomy (rarely as secessionist movements) • Mutual recognition mediates the interface between the state and Indigenous individuals and families and facilitates the organisation of resources, debates on values, the implementation of social strategy

12. Aboriginal health movement and Indigenous rights

13. Ronnie McGuinness, Aboriginal Health Worker, Victorian Aboriginal Health Service and Community Member Bev Simpson

14. Aboriginal and Torres Strait Islander Guidelines • Alice Springs 1986 • NHMRC Conference “Research Priorities to Improve Aboriginal Health” 200 people registered and 100 speakers • A biomedical agenda • Conference ‘takeover’ by Aboriginal activists who seized control of the agenda • 87 Recommendations – half related to ethics, funding & research practice • Camden Workshop August 1987 • National Workshop on Ethics of Research in Aboriginal health • 30 Aboriginal representatives along with a small number of NHMRC people and other observers

15. Aboriginal and Torres Strait Islander Guidelines • “This [the guideline development process] was one of the early successful examples of the community taking control of an issue and saying this is how it’s going to be done, and negotiating through a partnership to deliver a result” • Shane Houston, Former National Coordinator National Aboriginal and Islander Health Organisation in Humphery 2003 page 35

16. Aboriginal and Torres Strait Islander Guidelines • “The guidelines had quite an important effect on the NHMRC’s understanding of culture, this was not something the NHMRC was strong on before and the guidelines made them realise that traditional Western research methods were not always the best, and this left them thinking about research in other areas as well (such as HIV/AIDS) and it gave impetus to the establishment of state Aboriginal health ethics committees” • Prof Ross Kalucy NHMRC in Humphery 2003 page 35

17. Aboriginal and Torres Strait Islander Guidelines • Advisory notes • Drafted by Prof Ross Kalucy and Elisabeth Grant • Based in part on notes from the Camden workshop to be used in conjunction with the NHMRC Statement on Human Experimentation and Supplementary Notes • Key points of distinction from the Camden workshop • Ownership of data • Community control of the research process • De-politicised the Camden workshop proceedings (Humphery 2003) • Exploitation was a key driver, but protection from exploitation was not the underpinning of approach Aboriginal people were taking to ethical engagement

18. Aboriginal and Torres Strait Islander Guidelines • 1991 Interim Guidelines included sections on: • Consultation • Evidence of written consent; process through informed consent is made • Community development • Ownership of data

19. Aboriginal and Torres Strait Islander Guidelines • Literature review (McCauley, Griew, Anderson 2002) 10 key themes • Principles such as relevance or benefit • Consultation • Participation • Dissemination of research findings • Scope of guidelines • Other (history, examples of guidelines, collaborative research models, compliance and monitoring, specific issues such as genetic research, pharmacological trials)

20. Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research NHRMC 2003

21. Values and Ethics • “Values underpin what we perceive, believe, value and do. In the research context, to ignore the reality of inter-cultural difference is to live with outdated notions of scientific investigation…” • “To ‘misrecognise or fail to recognise (cultural difference) can inflict harm, can be a form of oppression, imprisoning someone [or a group] in a false, distorted and reduced model of being’… Research cannot be ‘difference-blind’…” • Values and Ethics 2003. NHMRC page 3

22. Values and Ethics Conceptual Framework Values and Ethics 2003 NHMRC Page 9

23. Values and Ethics • Structure • Introduction • Section on each of the key values • Meta-description of the value • Context, components • Demonstration of the value requires… • Allied requirements in the National Statement

24. Values and Ethics • For example: In demonstrating reciprocity participating communities, researchers and HRECs should consider: • How the proposed research demonstrates intent to contribute to the advancement of the health and wellbeing of participants and communities. • Whether the proposal links clearly to community, regional, jurisdictional or international Indigenous health priorities and/or responds to existing or emerging needs articulated by Aboriginal and Torres Strait Islander Peoples. • The nature of benefits for participants or other Aboriginal and Torres Strait Islander communities, and whether there is evidence of clear and truthful discussions about the potential benefit of the research proposal prior to approval… • Values and Ethics 2003 NHRMC page 11

25. Values and Ethics • Links between section on reciprocity and National Statement • All research proposal must be so designed as to ensure that any risk or discomfort or harm to participants are balanced by the likely benefit to be gained NS 1.1.4 • Each research protocol must be designed to ensure that respect for the dignity and wellbeing of the participants takes precedence over the expected benefits to knowledge NS1.4

26. Values and Ethics • Mutual comprehension • Construction of cultural difference – risks a construction of Aboriginality as ‘other’ (a representation as primitive other to the settler-self) • This is offset by links to principles in the National Statement • Value statements codify social values which may be significantly more fluid and multifaceted in social life (eg reciprocity) • This codification may obscure internal diversity as well as commonality with the dominant population • Mutual comprehension does not require ‘equivalence’ or ‘sameness’ nor cultural immersion

27. Values and Ethics • Mutual recognition • Requires an engagement with Indigenous social and political process (and consequently the rights agenda) • The mechanisms for this may be a point of contention as it was in the development of Values and Ethics

28. Indigenous Involvement in Australian Human Research Ethics Committees Stewart, Shibasaki, Anderson et al 2006 ANZJPH 36, 291-292

29. Values and Ethics • Mutual recognition and comprehension are not ‘disconnected’ ideas • Values expressed in the Values and Ethics document are relational • such as reciprocity, respect, equality, responsibility • This is significant as strategies to engage and understand are reinforcing

30. Values and Ethics • Reconciliation – De-colonisation • Values such as spirit and integrity • Process of engagement • High mutuality • A broader approach to reforming research policy and practice (eg. priority setting, Indigenous leadership/participation, knowledge exchange)

31. Increasing Risk Comprehension Recognition De-colonisation Reconciliation Least Vulnerable Greatest Mutuality

32. Values and Ethics Indigenous Ethics Paradigm National Statement Universal Ethical standards and principles Indigenous Engagement Empowerment and Conflict resolution

33. Conclusion • Values based guidelines • Can be integrated with Indigenous ethical paradigms • Can enable a shift from a ‘protective’ paradigm to one that is reconciliatory and de-colonising • Are limited to the extent to which they are reinforced by institutional reform of research processes and ethical regulation