1. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University Acting in the Right Spirit A presentation on Aboriginal Research and Study Protocols Developed by Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research, Endorsed by ECU Intended to benefit all ECU staff and students

2. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University Acting in the Right Spirit This presentation will explore: The need for codes concerning ethical research The development of codes over time The added dimensions of Aboriginal Codes The background to ECU’s Aboriginal Research and Study Protocols

3. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University What are ethics? ‘Ethics: The concepts of right and wrong, justice and injustice, virtue and vice, good and bad, and activities to which these concepts apply’. “…‘ethical conduct’ is more than simply doing the right thing. It involves acting in the right spirit.” NHMRC National Statement on Ethical Conduct in Research Involving Humans. Canberra AGPS: 2007 pages 100 & 3

4. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University Why are ethical codes for human research needed? WW2 Nazi’s horrific experiments on humans. USA 1932-1972 Tuskagee Study involving the effects of untreated syphilis on poor African/Americans. WW2 Australia tested chemical and biological weapons tested on soldiers. Had been not breaking any rules!

5. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University Guinea Pigs Dachau, Germany 1943 Tuskegee USA 1932-72 North Brook Island, Australia 1944

6. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University Nuremberg Code 1949 Ten point code the principles of which concerned the: Participant Researcher Research

7. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University Nuremberg Code 1949 Premised on the primacy of individual autonomy. Focused on the three elements of researcher, participant and experiment. Code did not include research bodies or institutions.

8. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University National Health and Medical Research Council 1997 NHMRC Australian Research Council Australian Vice-Chancellors’ Committee Together made a statement on ethical conduct in research involving humans and in doing so established a code of ethics for human research in Australia.

9. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University National Health and Medical Research Council 1997 Defined human research as: Garnering opinion Undergoing psychological, physiological or medical testing or treatment. Gathering information through observation or personal, documents or other materials. Accessing information (identifiable or otherwise) as part of an existing published or unpublished source or database. Collection and use of body organs, tissues, fluids or exhaled breath.

10. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University National Health and Medical Research Council 1997 Defined the principles of ethical conduct as: Respect for human beings –Each person having intrinsic value, which must inform all interaction between people. –Research must recognise autonomy, protect those with limited autonomy and empower and protect those with no autonomy.

11. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University Defined the principles of ethical conduct as: Merit and integrity –The research is justifiable by its potential benefit. –The research is appropriately designed, conducted, supervised and carried out with honesty and integrity. National Health and Medical Research Council 1997

12. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University Defined the principles of ethical conduct as: Justice –The research has a fair distribution of benefits and burdens. –There is fair treatment of participants and results are achieved through just means. National Health and Medical Research Council 1997

13. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University Defined the principles of ethical conduct as: Beneficence –The likely benefit of the research must justify any risks of harm or discomfort to participants. Respect –Having due regard for the welfare, beliefs, perceptions, customs and cultural heritage, both individual and collective, of those involved in research. National Health and Medical Research Council 1997

14. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University National Health and Medical Research Council 1997 Also articulated six core values which were to be upheld for ethical research with Indigenous peoples: Reciprocity Respect Equality Responsibility Survival and Protection Spirit and Integrity

15. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University The statement included governance of research: - Oversight of research institutions. - Composition and operations of ethics committees. - Compliance with all legal obligations. National Health and Medical Research Council 1997

16. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University Australian Institute of Aboriginal and Torres Strait Islander Studies In 2002 AIATSIS produced ‘Guidelines for Ethical Research in Australian Indigenous Studies’ Articulated fourteen principles of ethical research most very different from previous codes.

17. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University Guidelines for Ethical Research in Australian Indigenous Studies 2002 The principles concern the entire sphere of Aboriginality, culture and heritage are not divorced from human in human research. Primacy of autonomy is no longer the underpinning principle; the individual is respected but his/her role, as a conduit of culture is at least as important. Institutional knowledge is no longer the primary knowledge; there are different ways of knowing, understanding and dealing with the subject of research, this knowledge should have primacy.

18. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University Guidelines for Ethical Research in Australian Indigenous Studies 2002 The research is no longer done on the participant; instead they are actively engaged in negotiations about the meanings of the subject and the methods of research. Consent is integral to the entire process of research; it must be sought at an individual and collective level and is inextricably bound up with the negotiation of meaning. The researcher or the institution does not necessarily own the research or the results. The research must firstly benefit the community before it can be disseminated elsewhere.

19. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University NHMRC 2003 In 2003 NHMRC produced ‘Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research’ This expanded the values stated in 1997 edition and explained how they might be applied in practice. Although written quite differently to the guidelines produced by the AIATSIS the code also articulated that different approach:

20. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University NHMRC 2003 Reciprocity Reciprocity requires the researcher to demonstrate a return (or benefit) to the community that is valued by the community and which contributes to cohesion and survival. Respect It is critical that respect underlies all aspects of the research process, especially sensitive negotiations such as those related to the publication of research findings.

21. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University NHMRC 2003 Equality Research should seek to advance the elimination of inequalities. Responsibility Researchers carry responsibilities in addition to the science of their inquiry.

22. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University NHMRC 2003 Survival and Protection Researchers will need to demonstrate through ethical negotiation, the conduct of research and dissemination of research findings that they are trustworthy and will not repeat the mistakes of the past. Spirit and Integrity Researchers are perceived as owing an obligation to the spirit and integrity of communities not just to individuals. It is clear that Indigenous Australian communities will look to see if what is proposed is consistent with their values.

23. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University NHMRC 2003

24. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University ECU: ‘Aboriginal Research and Study Protocols’ 2012 Developed by Kurongkurl Katitjin the protocols: Fulfil a strategic priority of the ECU Reconciliation Action Plan Serve as a guide for staff and students undertaking research, projects or fieldwork that involve Indigenous Australian issues, people or knowledge or involves an issue that will impact on the Indigenous Australian population. Provide clear and agreed protocols around Indigenous Australian research to ensure that research activity is informed by thorough cultural awareness and respect.

25. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University ECU: ‘Aboriginal Research and Study Protocols’ 2012 Ensure that: Research respects the shared values of Indigenous Australian peoples Is relevant to their priorities, needs and aspirations Leads to long-term ethical relationships between researchers, institutions, sponsors and communities.

26. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University ECU: ‘Aboriginal Research and Study Protocols’ 2012 Ethics Based on the six core values of the NHMRC ‘Values and Ethics’ document: Reciprocity, respect, equality, responsibility, survival and protection, spirit and integrity Reflects the requirements of key documents that must be addressed by applicants by the ECU Human Research Ethics Committee or the Western Australian Aboriginal Health Ethics Committee.

27. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University ECU: ‘Aboriginal Research and Study Protocols’ 2012 Consultation should: Seek people’s views about the proposed project, the nature of, and the suggested approach to be used Seek from the community what other issues they may want included in the methods Raise the issue of who will have ownership of and access to the results.

28. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University ECU: ‘Aboriginal Research and Study Protocols’ 2012 Consultation should: Explore the relevance of the project to Indigenous Australian people and communities. Establish how the outcomes will be disseminated to the community and participants Identify what benefits or returns the community wants from the process and whether these can or will be met by the outcomes.

29. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University Protocols in practice Do you need to seek ethical approval? Yes if the research involves Aboriginal people or any sphere of Aboriginality that has an impact on Aboriginal peopl Do these protocols make it harder to do research with Aboriginal people or to get approval for such? No the protocols and allied documents are intended to support the research process and to ensure it is done with rigour and respect.

30. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University Start up Student - contact supervisor Staff - contact ORI All read Instructions on applying for ethical approval at ECU www.ecu.edu.au/GPPS/ethics. www.ecu.edu.au/GPPS/ethics National Statement on Ethical Conduct in Human Research (NHMRC, 2007) Australian Code for the Responsible Conduct of Research (NHMRC, 2007) Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health (NHMRC, 2003) Aboriginal Research and Study Protocols (ECU 2012)

31. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University Ongoing Researcher and participants use practical plain English guide: Keeping Research on Track: A guide for Aboriginal and Torres Strait Islander peoples about health research ethics (NHMRC, 2005)

32. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University Writing Writing up Indigenous Research: authorship, copyright and Indigenous knowledge systems Terri Janke At any time come to Kurongkurl Katitjin for advice if you have a specific problem

33. Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research Edith Cowan University Acting in the Right Spirit Thank you for your attention Any questions?