Professor Ian Anderson

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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
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Protocol
Uncle Kevin Coombs OAM
Onemda is a Woiwurrung word for spirit,
well-being love
Aunty Joy Murphy-Wandin
Aunty Joan Vickery OA
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Indigenous Australia
Bay of Fires
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Bay of Fires April 2008
Palawa Trowerna Pyemairrenner - Trawlwoolway
Plairmairrenner and related Clans
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Bay of Fires April 2008
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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

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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

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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.

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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

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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

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Indigenous Health Research Ethics Rights

• Self-Determination A Legal Policy construct
• Universal Right protection from tyranny.
  Indigenous peoples 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

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Aboriginal health movement and Indigenous rights
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Ronnie McGuinness, Aboriginal Health Worker,
Victorian Aboriginal Health Service and Community
Member Bev Simpson
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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

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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
  its 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

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Aboriginal and Torres Strait Islander Guidelines

• The guidelines had quite an important effect on
  the NHMRCs 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

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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

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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

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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)

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

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

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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

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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

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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

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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

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

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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)

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Least Vulnerable Greatest Mutuality
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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