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Monash Bioethics Review Vol. 22 No .4 8 October 2003 SYMPOSIUM ON ETHICS IN INDIGENOUS HEALTH RESEARCH A commentary on the NH&MRC Draft Values and Ethics in Aboriginal and Torres Strait Islander Health Research LYNN GILLAM Centre for the Study of Health and Society, Department of Public Health, and Centre for Applied Philosophy and Public Ethics University of Melbourne PRISCILLA PYETT VicHealth Koori Health Research and Community Development Unit, Centre for the Study of Health and Society, Department of Public Health, University of Melbourne ABSTRACT In this paper, we discuss and critically evaluate the National Health and Medical Research Council's recently released document entitled 'Draft Values and Ethics in Aboriginal and Torres Strait Islander Health Research'. We provide a brief account of its development, philosophy and contents, and then consider how the document could be used by HRECs. We recommend that three specially targeted documents be developed from this one document, to meet the particular needs of HRECs, Indigenous people and researchers. We propose a system of Indigenous ethics advisers as a way to implement the central ideas of the new draft guidelines, withoutfalling into the legalism' and rule-jollowing that these guidelines explicitly aim to avoid. Introduction In late 2002, the National Health and Medical Research Council of Australia (NHMRC) released a document entitled Draft Values and Ethics in Aboriginal and Torres Strait Islander Health Research. 1 This document is intended to replace the NHMRC's original set of guidelines for Aboriginal and Torres Strait Islander health research, which were issued in 1991 . Given the importance of this new document, and the far-reaching implications it will have for Aboriginal and Torres Strait Islander peoples, researchers, and Human Research Ethics Committees (HRECs), we believe that wide-ranging and considered discussion of it is vital. Here, we offer some observations on the draft document from the perspective of HRECs. We consider how HRECs might interpret and

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Page 1: A commentary on the NH&MRCDraft Values and Ethics in Aboriginal and Torres Strait Islander Health Research

Monash Bioethics Review Vol. 22 No .4 8 October 2003

SYMPOSIUM ON ETHICS ININDIGENOUS HEALTH RESEARCHA commentary on the NH&MRCDraft Values and Ethics inAboriginal and Torres StraitIslander Health Research

LYNN GILLAMCentre for the Study of Health and Society, Department of Public Health,and Centre for Applied Philosophy and Public EthicsUniversity of Melbourne

PRISCILLA PYETTVicHealth Koori Health Research and Community Development Unit,Centre for the Study of Health and Society, Department of Public Health,University of Melbourne

ABSTRACT

In this paper, we discuss and critically evaluate the NationalHealth and Medical Research Council's recently releaseddocument entitled 'Draft Values and Ethics in Aboriginal andTorres Strait Islander Health Research'. We provide a briefaccount of its development, philosophy and contents, and thenconsider how the document could be used by HRECs. Werecommend that three specially targeted documents be developedfrom this one document, to meet the particular needs of HRECs,Indigenous people and researchers. We propose a system ofIndigenous ethics advisers as a way to implement the centralideas of the new draft guidelines, without falling into the legalism'and rule-jollowing that these guidelines explicitly aim to avoid.

IntroductionIn late 2002, the National Health and Medical Research Council

of Australia (NHMRC) released a document entitled Draft Values andEthics in Aboriginal and Torres Strait Islander Health Research. 1 Thisdocument is intended to replace the NHMRC's original set of guidelinesfor Aboriginal and Torres Strait Islander health research, which wereissued in 1991 . Given the importance of this new document, and thefar-reaching implications it will have for Aboriginal and Torres StraitIslander peoples, researchers, and Human Research Ethics Committees(HRECs), we believe that wide-ranging and considered discussion of itis vital. Here, we offer some observations on the draft document fromthe perspective of HRECs. We consider how HRECs might interpret and

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try to put into practice some of the material in the document, and pointto some difficulties in seeing it as a direct basis for HREC deliberationsand procedures. In light of this discussion, we suggest a process whichmight make best use of the document and the ideas contained in it ,whilst still being feasible and effective in the current climate of highworkload and under-resourcing of HRECs. We intend this as acontribution to what we hope will be an extensive and ongoing debate,rather than as the last word on the subject.

The development of the 2002 Draft Values and Ethicsdocument.

Since colonisation, Aboriginal and Torres Strait Islander peoplehave experienced research as invasive, disrespectful and exploitative.sConsequently many remain suspicious of research and distrustful ofresearchers.t

It was Indigenous critiques of research practice, particularlythroughout the 1980s, that led to the development of the NHMRC's firstset of guidelines for Aboriginal and Torres Strait Islander research: the1991 Interim Guidelines on Ethical Matters in Aboriginal and TorresStrait Islander Health Research.4 The process leading up to thedevelopment of those guidelines has been documented by Humphery inan article that makes plain the depth of feeling amongst Aboriginalpeople about the problems of research, and their determination to takeaction to change things." But as Humphery shows, the guidelines thatcame out of the process of consultation and negotiation that was set inmotion in 1986 were not entirely satisfactory, and ended up as asomewhat 'watered-down' version of the recommendations made duringthe consultation process." Humphery argues that they were 'a carefulamalgam of acceding to Aboriginal criticisms of research practice whileretaining a highly "Western" sense of independent research, and alsopreserving a "white" institutional dominance'."

So the 1991 Interim Guidelines were never likely to be regardedas adequate for any great length of time. In addition, since they werepublished, other forces have set the stage for their revision. Firstly, thesocial and intellectual context has changed. The growth of theAboriginal community-controlled health sector and increase in thenumbers of Aboriginal and Torres Strait Islander researchers havegenerated calls for greater Aboriginal community involvement in andcontrol over research practice.f This has been accompanied by a call forethics review processes to require that the benefits of research accrueto the Indigenous communities involved in research.? rather thanprimarily to the researchers and their communities of origin. Thisconcern about real benefits to those who bear the burdens of researchhas been strongly expressed over recent years not just in the context ofAboriginal and Torres Strait Islander research, but also in relation toresearch conducted in developing countries by researchers from thedeveloped world, interested in developed world solutions to developingworld problems (such as better retroviral therapies to treat HN, when

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in many developing countries, health budgets cannot provide any formof drugs to anyone with HIV).lO

There were also more practical considerations: althoughadopted by funding bodies and ethics committees throughoutAustralia, these 1991 Interim Guidelines remained 'interim' andadherence to them has therefore been entirely voluntary.'! It must havebecome very evident that this situation could not reasonably be allowedto continue when the NHMRC reviewed its general guidelines for healthresearch, the Statement on Human Experimentation, in the late 1990s.This review resulted in the release in 1999 of a fully revised and greatlyexpanded National Statement on Ethical Conduct in Research InvolvingHumans.t? Such a comprehensive review, which involved not just theNHMRC but other national bodies responsible for funding andpromoting non-medical research (such as the Australian ResearchCouncil and the Academy of Humanities and Social Sciences), couldnot omit Aboriginal and Torres Strait Islander research, since this wasone of the types of research specifically covered in the existing NHMRCdocuments.

For all these reasons, then, the NHMRC embarked on a processof revising the 1991 Interim Guidelines on Ethical Matters in Aboriginaland Torres Strait Islander Health Research. A Working party (made upof researchers, Aboriginal community controlled health sectorrepresentatives, HREC representatives and policy makers) wasestablished to develop a framework for the revision. This frameworkwas based on a review of the national and international literature onAboriginal health research, 13 a nation-wide consultation and aworkshop involving a wide range of stakeholders in Aboriginal healthresearch. The Working Party prepared the Draft Values and Ethics inAboriginal and Torres Strait Islander Health Research document, whichwas then released by the NHMRC in 2002, with a call for comments. Bythe end of the submission period (February 2003), fifty threesubmissions had been received.t:' At the time of writing of this paper,the submissions are with the NHMRC and the Working Party forconsideration.

Brief overview of the 2002 Draft Values and Ethicsdocument

The 2002 Draft Values and Ethics document is different in manyways from the 1991 Interim Guidelines. The old guidelines were quitebrief in comparison to the new draft document, and dealt with quitespecific issues, such as how the Indigenous community should beinvolved in the research (for example, members of the community mustbe offered the opportunity to assist in the research and must be paidfor such assistance) and how ownership and publication of data mustbe handled (for example, findings must be reported back to thecommunity before any publication, and photographs must not bepublished). In contrast, the new draft document is a great deal longerand very much more general.

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The ethical principles outlined in the 2002 Draft Values andEthics document are based on six core values identified as relevant toAboriginal and Torres Strait Islander health research ethics:reciprocity, respect, equality, survival and protection, andresponsibility. As explained in the extensive 'Background' section whichforms the preface to the actual draft guidelines in this new document. t­these six values are understood as being bound together over time byspirit and integrity. 'Spirit' is defined as relating to 'the flow ofcontinuity between past, current and future generations', and 'in tegrity'as 'behaviour which maintains the coherence of Aboriginal and TorresStrait Islander culture'i'" In the draft guidelines section, each of thesesix core values are discussed as they pertain to Aboriginal and TorresStrait Islander culture. Then for each value, a set of 'Points to Consider'is provided. These points are addressed to both researchers andHRECs. We will discuss some of these points in detail below. Finally, alist of relevant allied requirements from the National Statement onEthical Conduct in Research Involving Humans is provided.

The difference in format and content between the old and newdocuments is not incidental. Rather, the changes in the new documentrepresent a fundamental shift in philosophy. In the 'Background'section, the Working Party focuses on the notion of an ethicalrelationship as the foundation for ethical research. Further, it arguesthat the construction of ethical relationships between Aboriginal andTorres Strait Islander peoples and the research community 'mu st takeinto account the principles and values of Aboriginal and Torres StraitIslander cultures'.J7 This is the reason that the new draft guidelines arecast around Aboriginal and Torres Strait Islander values.

Along with focus on relationships and Indigenous values comesa rejection of the idea of guidelines as a set of rules or minimumstandards. The new document explicitly seeks to

move away from a sole reliance on the quasi-legal considerationof compliance with rules. It seeks a more flexible approach thatencourages research to reposition itself to incorporatealternative perspectives, and exercise nuanced judgement as toits ethical implications.w

How this philosophy might work for HRECs will be a focus of ourdiscussion later in this paper.

It is not part of our main purpose here to critically examine thecontent and foundations of the core values identified in the draftdocument. However, we will make some brief comments to indicateavenues for discussion which may be taken up by others. Firstly, it isnotable that the core values are relatively uncontroversial, and,perhaps surprisingly, do not radically challenge accepted Westernprinciples of research ethics. The value of respect, for example, appearsto be identified as a universal value, which is 'fundamental to afunctioning and moral society'.'? It is then stated that in Aboriginal andTorres Strait Islander cultures, respect is connected with dignity, trustand co-operation.w All of these notions are familiar as concepts inWestern ethical discourse, as are at least some of the specific

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applications mentioned under the 'Points to Consider', such as 'ameaningful consent process' and 'a greed arrangements regardingpublication of research results'< ! Likewise, the core value of equality,and its interpretation in terms of fairness and justice, equality ofpartners in an agreement, and just distribution of benefits-- strikesfamiliar chords. Note that these similarities do not mean that nothingworthwhile was gained from articulating the core values. In the contextof past abuse and on-going systemic disadvantage and marginalisationof Indigenous people, the type of process that led up to the draftdocument is highly significant. It is also significant that the valuesidentified are those arising out of Indigenous culture and beliefs, ratherthan being brought in from the outside. That they happen to be quitesimilar in some ways to standard Western values does not at all negatethe importance of articulating them.

Secondly, out of the articulation of these core values arise anumber of interesting questions. One relates to the philosophical andanthropological debates over the claims of relativism and universalismas an account of values. Just how similar are these Aboriginal andTorres Strait Islander values to Western values? (Is the similarity notedabove overstated, or merely superficial, perhaps?) And what is thesignificance of any similarity for the theoretical debate? Other morepractical, but related questions arise regarding the status of special,separate guidelines for Indigenous research. It could be held that thisis really a transitional arrangement, until such time as the just claimsof Indigenous Australians have been appropriately recognised andfulfilled, and so the ethical issues in Indigenous research are simply anaspect of research ethics in general. Or it could be argued that the needfor separate guidelines will remain, since cultural difference willremain, no matter what idealistic predictions may be made aboutreconciliation. But if cultural difference rather than discrimination andoppression is the fundamental issue, this raises the question ofwhether separate guidelines are also needed for other distinct culturalgroups in Australia. These are difficult matters, which we do not intendto address here, but we raise them to give an indication of the breadthof discussion that could fruitfully be had around the 2002 Draft Valuesand Ethics document.

The provisions of the draft document from an HRECperspective

In this section we consider what issues the 2002 Draft Valuesand Ethics document might raise for HRECs attempting to use it intheir evaluation of a research project involving an Aboriginal or TorresStrait Islander community. We will focus in particular on the 'Points toConsider', which give the most specific guidance, and are therefore theparts that HRECs are most likely to turn to, even though they areaddressed both to researchers and HRECs without distinction.

Our first observation is that the 'Points to Consider' are likely tobe very helpful to researchers who want to conduct research with

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Indigenous communities. They indicate key issues that researchersneed to address in relation to their projects, many of which researchersnew to Indigenous research may not have been previously aware of. Forexample, a well-meaning but uninformed researcher could conceivablyapproach an Aboriginal community with the view that the right thing todo is to treat everyone, white or black, in the same way, honestlybelieving that this is how to show respect and commitment to equality.However, the Draft Values and Ethics document makes it quite clearthat such 'difference blindness' is not the right approach, and callsinstead for 'the intention to eliminate difference blindness in thedesign, conduct and dissemination of research'<> and strategies tocontribute to 'the opportunity for Aboriginal and Torres Strait Islandersto better advocate for or enjoy their cultural distinctivenessv>'

However, we do not think the 'Points to Consider' work well as aguide for HRECs. Partly this is a matter of the organization of thematerial in the Draft Values and Ethics document. There are a largenumber of points, some quite complex, and some overlapping invarious ways with other points. In its current form, this documentwould need quite a lot of sifting through and would not be immediatelyusable by an HREC. But more importantly, we believe that the contentof a number of the points would cause difficulties for an HRECattempting to use them to evaluate a research project.

One difficulty is that some of the issues that HRECs are askedto assess are highly subjective, intangible or hard to interpret, such as:

• whether there has been fair negotiation between theparties-"

• whether the proponents are clearly able to demonstratepersonal integrity26

• how the proposal will capture the potential implications oftraditional and contemporary knowledge-"

• whether agreements about data collection and use have thestrength necessary to sustain a sense of equality amongparticipants-f (Emphasis added)

Other issues are quite tangible matters, but would createdifficulties in terms of the HREC's knowledge base, and capacity toacquire the information that would be needed. This is because some'Points to Consider' relate to the internal workings of Indigenouscommunities and the particular issues facing them. There is no generalknowledge to be had about these matters-it will be different for eachcommunity. In our view, HRECs will have great difficulty indetermining such matters as:

• whether benefit has been valued by the relevantcommunityw

• whether Indigenous representation is appropriate30

• whether the relevant Indigenous organisations orcommunities have been consulted-!

• whether there is evidence of the engagement of communitiesthat communities perceive to be fair and just32

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• how researchers have considered the potential impact ofresearch on the cohesion and social functioning ofcommunities3 3 (Emphasis added)

Weare concerned that, in an effort to ensure that they arediligently applying the new draft guidelines, HRECs may feel that theyneed to carry out independent investigations into such matters as theappropriateness, relevance and thoroughness of the researcher'sprocesses of consultation and reflection. This would be problematic fora number of reasons. Firstly, it would produce a heavy burden in timeand resources for HRECs. HRECs are not well resourced as it is, but toinitiate investigations, make contact with Indigenous communities, andseek evidence on various matters would be a huge undertaking interms of HREC members' time-not to mention the delay in processingapplications, given the length of time it might take to establish contactand obtain a response. Secondly, in attempting to do this, the HRECwould inevitably encounter the problem of how to determine who arethe relevant people to approach, since communities do not operate onthe basis of formal hierarchical structures, and close knowledge of eachparticular community would be needed. Thirdly, and most importantly,such investigation is likely to need significant Indigenous input. Thiswould be intrusive, burdensome and quite probably inappropriate forIndigenous communities. Many communities do not routinely use thewritten forms of communication that HRECs are likely to want to seeand keep on file.

In light of these difficulties, an HREC might decide to rely onresearchers to provide their own evidence that adequate reflection hasoccurred and that adequate processes of consultation and negotiationhave taken place with the appropriate individuals and communities.But this is problematic as well . Although it would be less intrusive forIndigenous communities, since there would be no direct contact fromthe HREC, it still involves imposing a burden of documentation onthem, since they would still have to supply the researcher with letters,statements and the like. From the HREC perspective, there is also theissue of determining whether this constitutes reliable independentevidence, since the researcher may selectively approach people sheknows will support her, and avoid asking for letters or statements fromothers.

Finally, whichever path an HREC takes on this, it would becontrary to the expressed intention of the Draft Values and Ethicsdocument, which is to go beyond an approach based on quasi-legalprocedures designed to ensure compliance with a set of rules.> In ourview, though, this is what is likely to happen anyway, if ethicscommittees feel that it is their obligation to ensure that all the 'Pointsto Consider' have been appropriately dealt with in the research projectbefore them. Given this, and all the problems noted above, we suggestthat a somewhat different approach is needed in order to have theintent of the Draft Values and Ethics document put into practice inAboriginal and Torres Strait Islander research.

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Putting the document to best useWe suggest that three separate documents are needed: one each

for researchers, HRECs and Indigenous communities, but all developedfrom the current Draft Values and Ethics. Each document would have adifferent purpose. The detailed account of the core values andprinciples will be a useful aid for researchers, particularly for well­intentioned researchers who will be able to gain a good understandingof issues and processes to consider when engaging in research withIndigenous communities. It would also provide useful backgroundinformation for students and teachers, and could be consulted bymembers of HRECs when considering particular issues. A document forIndigenous communities needs to be written specifically by and formembers of Indigenous communities, in language that is moreappropriate for lay persons and community organisations. Processes bywhich Indigenous communities could assess researchers' intentionsand monitor the progress of research could be set, and perhaps someexplanation of the wider process of HREC review could be given. Theform and detailed content of such a document would obviously best bedeveloped by Indigenous communities themselves, and it is notappropriate for us to stipulate any further on this matter.

A shorter and more focused document is needed for use byHRECs. This needs to state clearly

• what to look for in assessing such research• how to assess issues such as:

• Indigenous representation• processes of consultation and negotiation• Indigenous communities' perceptions and values,

particularly of benefits and possible harms to them.

We further suggest that the documents for researchers andHRECs should be clearer in expressing and emphasising the keydifferences between what is required in research with Indigenouscommunities, and what is required ethically for research in othercontexts. This would be in keeping with the new document's emphasison rejecting difference blindness, and would help both HRECs andresearchers to see what the key issues are. For example, in relation tothe first two core values, some of the key differences that we haveidentified are as follows:

• Reciprocity:• research with Indigenous communities requires an

explicit process of exchange• researchers are expected to include communities in the

planning, process and outcomes of research• the research should incorporate processes of capacity­

building for Indigenous communities• benefits of the proposed research must be perceived as

benefits and valued by the Indigenous community

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• Respect:• researchers must demonstrate explicit recognition and

appreciation of cultural differences• researchers must demonstrate and take into account

an understanding of the ways communities makedecisions.

These are provided as examples of key differences . There aremany others, and identifying them adequately is again a process thatrequires significant Indigenous input-we cannot complete the taskhere. The point is that not all of the 'Points to Consider' are necessarilyvery different from ethical considerations in mainstream research orresearch with other culturally diverse populations, and without explicithighlighting, the crucial issues may get lost.

A proposed HREC processOur discussion so far suggests that it would be helpful to

narrow down and better specify the scope of what the HREC is trying toevaluate in relation to Aboriginal and Torres Strait Islander research.

Some of the 'Points to Consider' indicate a way of doing this.They include phrases such as 'How provision is made for appropriateongoing cultural advice';35 'How the proposal provides for a meaningfulconsent process';36 'What measures are identified to demonstratehonesty ...';37 'What strategies have been identified to .. .' and 'Whatsafeguards are in place...' .38 These are somewhat easier to assess, sincethey refer to specific aspects of a project application that an HRECcould look at, rather than trying to find out about the personalqualities of the researcher or the nature of the interactions they havehad with community members. What is needed, though, is a way forHRECs to get access to the knowledge and advice that, as we indicatedabove, they would still require to evaluate even these more tangiblestrategies, provisions and safeguards. At the same time, and in keepingwith the spirit of the 2002 Draft document, Indigenous communitiesalso need to be in a position to determine appropriate ways for them tohave more input into and control over the ethics review process.Indigenous ethics committees (or sub-committees) are rare. A study byKelly and O'Faircheallaigh found that only eleven universities inAustralia had instituted formal arrangements for the inclusion ofIndigenous staff on HRECs.39

Our proposal is that HRECs be required to formally involveAboriginal and Torres Strait Islander people in the review process,rather than simply trying to use the new draft guidelines, or adocument derived from them, on their own. This would be the bestway, in our view, to ensure that research proposals involving Aboriginaland Torres Strait Islander people and communities are actuallyconducted in the way envisaged in the new draft document. Indigenouspeople will be best placed not only to provide the knowledge ofcommunities and their processes that is needed, but also to interpret

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whatever set of guidelines is used from an Indigenous perspective­which surely must be a key feature of a successful process. Indigenousethics committees (or sub-committees), where they exist, would behighly appropriate bodies to be involved. The form of involvement couldvary, and would be a matter for negotiation between the HREC thatreceives the application, and the relevant Indigenous ethics committee.

It might be a joint sitting of both committees, a joint sub­committee, or in cases where the project has been submitted to theIndigenous committee as well, simply a verbal report, or a letter from arepresentative of the Indigenous committee.

Where there are no Indigenous ethics committees (or sub­committees), we suggest a system of Indigenous Ethics Advisersnominated and approved by an Indigenous community process. A listcould be developed of Aboriginal and Torres Strait Islander adviserswho have close knowledge of a range of Aboriginal and Torres StraitIslander communities and would be prepared to act as ad hoc expertadvisers to HRECs. Each Adviser's particular areas of expertise andlinks to specific communities would be included in the list. The listcould then be made available to HRECs, so that when they receive anapplication for research involving Aboriginal and Torres Strait Islanderpeople, they could readily find an appropriate person to consult. SinceHRECs are empowered already under the National Statement to consultexternal experts, this would not represent any major change to the waythey operate. The practice of consulting would simply be mademandatory for Indigenous research proposals. The Indigenous EthicsAdvisers would need to be appropriately paid for this process ofconsultation, and recompensed for any costs incurred. Arrangementsfor this would need to be made in some way-through project budgets,through HRECs, or perhaps directly from the NHMRC. The IndigenousEthics Adviser would:

• consider and advise the HREC whether they are the mostappropriate adviser and, if not, refer the HREC to anotheradviser;

• assess the proposal against the approved guidelines forAboriginal and Torres Strait Islander Health Research;

• consult and involve the appropriate communities in thereview and assessment of proposals and in monitoring theimplementation of the research;

• advise the HREC of the ethical assessment of the proposalfrom an Indigenous perspective.

ImplementationAdditional resources need to be provided for the implementation

of the new draft guidelines, or any document that arises from them.This would be true whether the 2002 Draft Values and Ethics documentis adopted in its current form, or whether an approach like the one wehave proposed is put into place. Training and workshops forIndigenous communities, researchers and HRECs would be an

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important step in educating all parties about the new guidelines. IfHRECs are to carry out any independent investigation and verification,they would need to be resourced (both in terms of staff time and costs)to do it. If the idea of Indigenous ethics advisers is accepted, theprocess of recruiting and training them would need to be fmanciallysupported, as would the on-going costs associated with their work.However good the words written on a piece of paper, putting them intopractice will require resources.

ConclusionThe proposal which we have put forward here in response to the

NHMRC's Draft Values and Ethics in Aboriginal and Torres StraitIslander Health Research comes very much from an HREC perspective.We believe it to be an effective and workable way of incorporating thecentral ideas of this document into HREC practice. We would beinterested to see how others who also take an HREC perspective viewour proposal, particularly on the issue of how readily useable the newdraft guidelines are for HRECs. However, we do not want to seediscussion coming only from the HREC perspective-it is vital also thatAboriginal and Torres Strait Islander people, and researchers , bothIndigenous and non-Indigenous, enter into the debate. There are moreissues to discuss than we have touched on here. For example, it wouldbe interesting to consider these new guidelines in the context ofexperiences and approaches in other countries, such as Canada, NewZealand and the US, which also have specific ethical guidelines forIndigenous research. In addition, it would be well worth consideringwhether the new guidelines should be extended to cover all researchinvolving Indigenous people (for example, anthropological, linguisticand historical research), not just health-related research. So , as westated at the outset, we hope to have made one contribution to a moreextensive and ongoing debate, and we look forward to seeing how itdevelops.

ENDNOTES

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6

7

NHMRC, Draft values and ethics in Aboriginal and Torres Strait Islander healthresearch, Canberra: NHMRC, 2002.Humphery K, Indigenous health and 'wes tern research', Melbourne: VicHealth KooriHealth Research and Community Development Unit, 2000.VicHealth Koori Health Research and Community Development Unit, We don't likeresearch-but in Koori hands it could make a difference, Melbourne: VicHealth KooriHealth Research and Community Development Unit, 2000.NHMRC, 'Guidelines on ethical matters in Aboriginal and Torres Strait Islanderhealth research,' Canberra, AGPS, 1991.Humphery K, 'Setting the rules: The development of the NHMRC guidelines onethical matters in Aboriginal and Torres Strait Islander health research', Canberra,New Zealand Bioethics Journal, vol. 4., 2003, pp. 14-19.Humphery, op. cit., 2000, p . 19 , p.18.Humphery, VicHealth Koori Health Research and Community Development Unit,op . cit., 2000, p. 18.

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Wyatt K, 'The rights of Aboriginal communities: The obligations of healthresearchers', Aboriginal and Islander Health Worker Journal, vol. 15 , 1991, p . 7;Johnston M-J, 'Improving the ethics and cultural suitability of Aboriginal healthresearch',Aboriginal and Islander Health Worker Journal, vol. 15, 1991 , p . 10-13.Anderson 1, 'Ethics and health research in Aboriginal communities ', in Daly J , ed.,Ethical intersections: health research, methods and researcher responsibility, St .Leonards, NSW: Allen and Unwin, 1996, pp. 153-165.Zion D, Gillam L and Loff B, 'The declaration of Helsinki, CIOMS and ethics ofresearch on vulnerable populations', Nature Medicine vol. 6 no . 6,2000, p . 616.Humphery, op . cit., p . 20.

NHMRC, National Statement on ethical conduct in research involving humans,Canberra: AGPS, 1999.McAulley D, Greiw R and Anderson I , The ethics of Aboriginal health research: Anannotated bibliography, Melbourne: VicHealth Koori Health Research andCommunity Development Unit, 2002.Houston S and McAulley D, 'Research involving indigenous communities', Ethics inhuman research conference, Canberra, 2003.NHMRC 2002, p .9 .

Ibid, p . 19.

Ibid, p . 5.

Ibid, p . 7 .

Ibid, p . 13, Section 2 .2 .

Ibid.Ibid, p . 15, Section 2.2 .

Ibid, p . 17, Section 2 .3.

Ibid, p. 15, Section 2 .2 .

Ibid, p . 21, Section 2.5.

Ib id, p . 13 .

Ibid, p. 23.

Ibid, p. 17 .

Ibid, p . 17 .

Ibid, p. 12.

Ibid, p . 15 .

Ibid, p . 17.

Ibid.Ibid, p. 15 .

Ibid, p. 7 .

Ibid, p . 15 .

Ibid.

Ibid, p . 19.

Ibid, p . 21.Kelly R and O'Faircheallaigh C, Indigenous participation in managing universityresearch, Nathan: Centre for Australian Public Sector Management, GriffithUniversity,2001.