kurongkurl katitjin, centre for indigenous australian education and research edith cowan university...

Kurongkurl Katitjin, Centre for Indigenous Australian Education and ResearchEdith 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



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


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


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!


Guinea PigsDachau, Germany 1943

Tuskegee USA 1932-72

North Brook Island, Australia 1944


Nuremberg Code 1949

Ten point code the principles of which concerned the:

Participant

Researcher

Research


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.


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.



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an existing published or unpublished source or database.• Collection and use of body organs, tissues, fluids or exhaled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.



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.



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.




Justice – The research has a fair distribution of benefits and

burdens.– There is fair treatment of participants and results are

achieved through just means.




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.




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


The statement included governance of research:

- Oversight of research institutions.

- Composition and operations of ethics committees.

- Compliance with all legal obligations.



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.


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.


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.


NHMRC 2003In 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:


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.


NHMRC 2003

• Equality Research should seek to advance the elimination of inequalities.

• ResponsibilityResearchers carry responsibilities in addition to the science of their inquiry.


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 IntegrityResearchers 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.


NHMRC 2003


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.



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.



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.



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.



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.


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.


Start upStudent - contact supervisor Staff - contact ORI

All read• Instructions on applying for ethical approval at ECU

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)

http://www.ecu.edu.au/GPPS/ethics


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)


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



Thank you for your attention

Any questions?

kurongkurl katitjin, centre for indigenous australian education and research edith cowan university...

Documents

ethical research

research bodies

kurongkurl katitjin

medical research council

ecus aboriginal research

defined human research

ethical codes

ethical conduct