Monash Bioethics Review Vol. 22 No.4 26 October 2003

An indigenous New Zealand healthresearcher's perspectiveCHRIS CUNNINGHAMDirector, Health ResearchSchool of Maori StudiesMassey UniversityWellington, New Zealand

Drs Gillam and Pyett have provided a commentary on the recentNHMRC document Draft Values and Ethics in Aboriginal and TorresStrait Islander Health Research. In their paper they make five usefulobservations:

• The guidelines are intended to move away from a quasi-legalframework of rules and compliance;

• The six core values are surprisingly uncontroversial, almostuniversal;

• The existence of separate guidelines for ATSI suggests thateither they are transitional towards an integrated set, or thatATSI will always be regarded as a special case;

• The 'points to consider' identified in the guidelines while helpfulfor researchers are not of help to ethics committees; some of the'points' are subjective and intangible and therefore difficult tomeasure;

• Committees may either need to have their own investigativeabilities or rely on researchers' self-assessment of, for example,the quality of their consultation.

These authors recommend that three additional documentsshould be developed to provide interpretation for each of researchers,ethics committees and indigenous people. But are they seeking claritydown the wrong path?

While it is easy to concur with these observations , they wouldappear to stem from the manner in which the 'draft values and ethics'are conveyed. Rather than producing guidelines or standards forethical review, the NHMRC document attempts to convey a number ofmessages in a somewhat mixed manner. In New Zealand thesemessages are handled through more discrete processes, and it ispossible that this separation adds both clarity and clout in ensuringthat health research is both ethical and responsive to the needs andexpectations of Maori.

Thus ethical review and a review of responsiveness are separateyet inter-related processes in which research proposals are assessedand researchers invited to respond to the issues raised. It is useful toexamine these dual processes further as a model for how similar issuesmight be reconciled in Australia.

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Ethical reviewOur experience in New Zealand has been based on a clearly

articulated partnership model between Maori and the Crown whichvalues and guarantees participation by Maori in the review process.Operational Standards for New Zealand's ethics committees released in2002 raise the profile of this partnership-. Accredited EthicsCommittees are required to have two Maori members and also haveexpectations of non-Maori members as follows:

At any time a committee shall have at least two Maori members,who should have an awareness of te reo Maori and anunderstanding of tikanga Maori. All members of ethicscommittees are expected to have knowledge of the Treaty ofWaitangi and its application to ethical review.s

That Maori people should be part of the process is fundamental.Yet the supply of qualified (and willing) Maori individuals has at timesbeen an issue, and is clearly an issue for an indigenous Australianpopulation which is significantly more a minority population inAustralia than are Maori in New Zealand.

Training programmes for all ethics committee members, and onoccasion for Maori members specifically, have sought to ensure asystematic review process, with committees learning from each otherthrough their respective experiences.

It has been important for Maori committee members to clearlynegotiate their role in the review processes. Are they there to provide aMaori perspective on essentially western standards of ethical review, oris their role to provide for a Maori ethical review against Maoristandards? Is there a middle ground, perhaps, or a transition from theformer to the latter situation? By-and-large the process of currentreviews is the former case, whereby Maori members provide a Maoriperspective. Yet there is some pressure from Maori researchers andrespondents to see 'by Maori for Maori' research reviewed against Maoristandards only. Some authors have furthered the debate by suggestingappropriate standards for review>.

ResponsivenessThe other discrete process which is handled by the funders of

research in New Zealand is that which assesses the responsiveness ofresearch to Maori needs and expectations. 'Responsiveness to Maori' isa concept which has existed in New Zealand since the late 1980s.Originally borrowed from a Canadian government policy concerningmandatory contracting between government departments and bands ofnative Canadians, the concept grew from the policy statements of theLange labour governments. The key to responsiveness is answering thequestion, 'responding to what'. In this setting it is responding to Maori,or ATSI, needs and expectations.

The Health Research Council of New Zealand has chosen tooperationalise this concept in assessing applications for research

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funding". While ethical review is a longstanding prerequisite forfunding, assessing responsiveness is a new process . Applicants areinvited to identify how their proposal is responsive with the clearexpectation that demonstrating responsiveness to Maori will advantagethe application relative to other proposals. They must describe:

• How their research might contribute to the health needs ofMaori?

• What is the health significance and context of their research toMaori?

• Where was this research priority identified and who by?• Does the proposed research have the potential to advance

knowledge on the health issue for Maori?

They must also identify the Maori groups that were consultedregarding their proposal, and why and how they were selected, whattheir on-going role will be, and how the researchers have responded toany recommendations made by the Maori groups. It is not sufficient tohave consulted - rather, acting on the information received throughconsultation is necessary.

A particular focus is whether the research will specificallycontribute to Maori research workforce development.

In terms of the research methodology, attention is given to howMaori participants might be recruited into the study. Further, if data orinformation will be collected from Maori participants, applicants areasked in what ways has the research been designed to ensure thatMaori tikanga (culture) will not be compromised, and how the datafrom Maori is to be collected, stored and analysed. Finally, theresearchers are asked to describe how they will actively disseminate theresearch results to Maori, both participants and more generally.

The philosophy in a health research setting is clear. Eitherapplicants must demonstrate their experience in undertaking researchwith and for Maori, or they must demonstrate that they have access tothe necessary expertise and advice from Maori on meeting Maoriexpectations. Such advice might be offered through advisors, advisorycommittees, research collaborators, or Maori community groups suchas iwi, hapu and whanau (tribes, sub-tribes and extended families) .

Formulaic answers are discouraged by avoiding the checklist orrule-based approach, with answers necessarily customised to specificresearch settings.

This review of responsiveness initially caused some angstamong researchers, many of whom failed to identify any relevance forMaori in their particular research questions. Yet the mandatory reviewhas now encouraged the major research providers (typicallyUniversities) to establish formal relationships with Maori at aninstitutional level, to assist individual researchers and research groupsin meeting responsiveness expectations.

These dual processes of ethical review and a review ofresponsiveness cover an area of interest broadly similar to the draft

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NHMRC guidelines. They ensure a high degree of participation by Maoriboth in the research processes and the reviews. I would suggest thereis much to be gained for ATSI peoples, researchers and HRECs alike inadopting a similar approach for Australia.

In recommending the New Zealand approach as a model worthconsidering, I would emphasise five issues for development.

Indigenous ethics advisersThe suggestion of advisers seems at once unprofound and

obvious, yet in a nation where indigenous peoples are vastly out­numbered, the realities of engaging suitable advisers are neitherunprofound nor obvious. Ethics committees are charged with the job ofassessing applications, it is very much a team effort, and if they do notpossess either the experience or the expertise in-house, then seekingexternal advice is the only option available. HRECs need to be able torespond to the skills and abilities of the advisers, not the other wayaround.

ResponsivenessIt is critical that the research sector recognises the desire of

ATSI populations to continue to live in Australia as indigenouspopulations. The sector must also recognise the responsibility of thegovernment and its agents to protect ATSI populations. UnderstandingATSI expectations is the first obvious step. It is important tounderstand that the research sector doesn't have to agree or validatethe expectations, rather the sector must understand and identify howand if it will respond in a research sense.

TrainingUndersupply of qualified ATSI people is an issue which can only

be addressed through active recruitment, training and retention.Perversely, many of the ATSI people with the right skills will haveconflicts of interest as they may be applicants as researchersthemselves. It is also clear that non-indigenous members of HRECshave a responsibility to ensure responsiveness and the protections ofall participants in research, including ATSI peoples.

AuditThe small number of ATSI ethics advisers should audit the

system regularly, perhaps annually. Caucusing with their ATSI peersand requiring reports from Chairs of HRECs on 'how things are going'is a useful formative evaluative tool for informing both policy andpractice.

By ATSI for ATSIIf the New Zealand experience is considered, then one primary

pathway for increasing the confidence of ATSI peoples in research

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enterprise is to strongly develop the ATSI research workforce . A criticalmass of ATSI researchers can then begin the task of retoolingAustralia's health research capacity to respond appropriately-in anempathetic rather than sympathetic way. Perversely, indigenousresearchers can be caught by a system which is designed to supportthem and forced both to compromise and to meet a cumulative set ofstandards (system standards and ATSI standards) . Nevertheless, it isdifficult to see how Australia's research system can respond withoutthis development, even with the existence of well-meant, mixed­messages in the form of guidelines.

ENDNOTES

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Ministry of Health, Operational standards for ethics committees, Wellington:Ministry of Health, 2002.Ibid., para. 129.

Durie A, 'Me tipu ake to pono: Maori research, ethicality and development', paperpresented at the Te Oru Rangahau Maori Research and Development Conference,Massey University, Palmerston North, 1998.Wetere KT, Te urupare rangapit: Te rarangi kaupapa/Partnership perspectives: Apolicy statement (A report from the Minister of Maori Affairs), Wellington:Department of Maori Affairs, 1998.Health Research Council of New Zealand, Guidelines for researchers on healthresearch involving Maori, Auckland, HRC 1998 see: www.hrc.govt .nz/Maoguide.htm