Think globally, act locally: collective consent and the ethics of knowledge production

Maui Hudson Introduction

production has been M aori mistrust of researchers. The legitimisation of mechanisms, such as collective consent, that enhance community engagement in the evaluation of research ethics will go some way to regaining this trust by M aori and other indigenous peoples. If the goals of research projects are more closely aligned with those of communities, and participants and communities interests are protected in the ethical review process, the ability of research to yield real and tangible benets will be enhanced.

The existence of different ethical frameworks and interpretations of ethical principles requires thoughtful engagement and space for negotiation to ensure that ethical guidelines meet community expectations. Indigenous communities are challenging the use of universal ethical constructs in research that impinges on culturally determined mechanisms for decision-making. Arguments are advanced for mandating local commuBiographical note Maui Hudson desnities to determine the approcends from the iwi (M aori tribal groups) priate interpretation of these of Whakatohea, Ngaruahine and Te Universal Mahurehure, and has connections to principles. One such area for England, Ireland and Scotland. He works negotiation is group or colethics at the Institute of Environmental Science lective consent. Collective and Research Ltd, a state-funded research Ethical principles guide the consent does not remove the institute, where he engages with M aori practice and behaviour of need for individual informed and Pacic communities, provides cultural and ethical advice to researchers and researchers to ensure that consent but it enhances the develops research projects. He is actively research is undertaken in existing mechanisms used to involved in research projects at the interassess the implications of a ways to protect and face of indigenous knowledge and science. enhance the interests of the research project for the wider Email: maui.hudson@esr.cri.nz community. The promotion participants. When evaluating the ethical aspects of of collective consent as a health research, ethics commore accountable process of consultation should ensure that the appropriate people are mittees typically apply a common set of principles involved in discussions about the relevance of to all research proposals. As ethical reviews the proposed research. It will also enhance the emerged to address issues of unacceptable ability of the community to establish a mean- research practice, principles based largely on ingful relationship with the research group, western ideals of ethics informed the development negotiate culturally appropriate ethical para- of international codes of medical ethics, such as meters for the project, and act as a de facto the Nuremburg Code, the Declaration of Helsinki monitoring interface between communities, and the Belmont Report. These codes adopt a researchers and ethics committees. The legacy stance that principles for conducting research are of negative research experiences and margin- fundamental or universal in nature. The core alisation in systems and processes of knowledge framework for universal biomedical ethics as
ISSJ 195 r UNESCO 2009. Published by Blackwell Publishing Ltd., 9600 Garsington Road, Oxford, OX4 2DK, UK and 350 Main Street, Malden, MA 02148, USA.

126

Maui Hudson

formulated by Beauchamp and Childress around the principles of respect for autonomy, nonmalfeasance (do no harm), benecence (do the most good), and justice (Beauchamp and Childress 1994) should guide researchers to produce ethically sound research. Cultural understandings inuence the application and utility of ethical concepts. Several studies have shown that, despite the existence of similar concepts in different cultures, there is a discernable difference in their practical application, with a common tendency towards a benecence-oriented approach rather than the autonomy-oriented approach favoured in contemporary western bioethics. Tsai (1999) suggested that this difference reected the inuence of sociocultural factors, while Aksoy and Tenik (2002) noted a different conceptualisation of the principle of justice which, in the Islamic tradition, was communitarian, with a primary duty to defend the rights of every individual in society by protecting benets to communities. Oguz (2003) criticised the universal notions of respect for autonomy as culturally insensitive to social constructs in Turkish society where individual autonomy has no meaning in practical life and collective structures are allocated decision-making roles. Collective autonomy can vary in its denition and application, depending upon the blurring of individual boundaries and the nature of relationships in the collective. A case in point is Hudsons (2004a) observation that, while it is possible to draw parallels between western ethical principles and M aori values, M aori members of ethics committees favoured a broader interpretation of what should be considered relevant in the context of research ethics. This is consistent with other M aori writers who have argued that ethical review of projects should include the consideration of M aori research workforce development, alignment with M aori development goals, resource allocation, exclusion of M aori from studies, development of traditional M aori knowledge and cultural and intellectual property rights (Cram 2003; Hudson 2004a, 2004b; Robson 2004; Sporle and Koea 2004a). The Universal Declaration on Bioethics and Human Rights, adopted in 2005 by the member states of UNESCO, aims to provide a universal framework of principles and procedures to guide nation-states in the formulation of their legislation, policies or other instruments

in the eld of bioethics (UNESCO 2006). The declaration outlines an expanded range of principles that should be respected in decision-making and addressing bioethical issues. These include: human dignity and human rights, benet and harm, autonomy and individual responsibility, consent, persons without the capacity to consent, respect for human vulnerability, privacy and condentiality, equality, justice and equity, nondiscrimination and non-stigmatisation, respect for cultural diversity and pluralism, solidarity and cooperation, social responsibility and health, sharing of benets, protecting future generations and protection of the biosphere and biodiversity. The recent inclusion of human rights in bioethical frameworks constitutes a further advance in thinking. However, Pacic delegates at the conference on Pacic Ethics of Knowledge Production were concerned that the Universal Declaration of Bioethics and Human Rights privileged individual rights over more collectively oriented understandings of rights and responsibilities (Mila-Schaaf 2007).

Systematising ethics
In order to be considered valid, research must follow the rules of research and ethics and by default, ethical review becomes one measure of research excellence (Ahuriri-Driscoll et al. 2007). Ethics can be considered pedagogies of practice and ethics committees are apparatuses that regulate a particular form of ethical conduct (Denzin 2003). In New Zealand ethical review in health research is guided by the Operational Standard for Ethics Committees (Ministry of Health 2006). The guiding principles are based on universal codes and are listed as: respect for persons, informed consent, privacy and condentiality, validity of research proposal, minimisation of harm, justice, cultural and social responsibility and compensation for research participants. Research proposals are primarily considered against the principles of informed consent, condentiality, minimisation of harm, and validity. These ethical principles are conceptualised so that they can be addressed through engagement with, that is, consent by, participants (Hudson 2004b). It is argued that concepts such as justice and cultural and social responsibility should not be addressed by individual

r UNESCO 2009.

Collective consent and the ethics of knowledge

127

Table 1: Levels of ethical principles Internal ethicality Informed consent Condentiality Research validity Respect for participants Minimise harm (to participants) Compensation for participants Source: Hudson, 2004b External ethicality Justice Cultural responsibility Social responsibility Respect for communities Minimise harm (to communities) Compensation (for communities)

participants but require a more representative or a broader community perspective. Similarly, the principles of respect, minimisation of harm and compensation could also be interpreted as requiring community input to ensure they are appropriately addressed. This creates two levels of ethical principles (see Table 1); those that address the ethics and safety of the study for the participants (internal ethicality of the study) and those that relate to the ethics and safety of the study for the community (external ethicality of the study). Ethicality is the situated, specic and experiential ethics talk of citizens. It reects the ethical thinking that is located in specic life experiences, diffracted through historical memory and cultural location, and related to valuations of trust and the quality of relationships (Scott et al. 2005). Durie (1998) states that notions of ethicality can be assumed to be drawn from specic cultural bases rather than being universally applicable. Ethical best practice is constantly changing in response to emerging ethical issues, controversies and community expectations, and ethicality (or the practice of ethical judgement) reects communities understanding and expectation about the relationship between ethical principles and their ongoing experience. The propensity for misunderstanding language and values in cross-cultural studies underpins many of the challenges to the robustness of traditional processes of gaining informed consent (Walsh-Tapiata 1998). This, in turn, has led to notions of defensibility and expectations of free and informed prior consent to address evolving community expectations. Informed consent is an appropriate mechanism to address issues related to the internal ethicality of a project and is generally

dealt with extremely well in the current systems of ethical review. However, issues of external ethicality may not be appropriately addressed through individually mediated consent processes. They might best be considered by community groups or their representatives. Issues of external ethicality such as justice and social and cultural responsibility are less likely to receive attention in standard ethical review processes. External ethicality principles are concerned with the consequences of the project, the likely impact of the project on those members of the community who have not participated in or consented to the research project but are affected by its outcomes. Deliberation at this level relates to societal values such as fairness or justice and potentially addresses areas of central signicance to indigenous communities such as inequality. Consideration of how a research study ts within a broader social agenda is often decided by funding bodies and is often considered to fall outside the realm of deliberation for ethics committees, despite the bearing this has on the potential benets and risks of the study. While this debate takes place within moral and ethical realms, action or inaction on these issues is often more political in nature, as it essentially involves decisions about resource allocation. The eld of research ethics and the ethical review process have therefore focused on the safety of individual participants and generally gives less consideration to the impact of specic research projects on creating, intensifying or maintaining inequalities in the wider community (Hudson 2004a). Mechanisms to increase community engagement and control in the processes of ethical review would be a way to better guarantee external ethicality.

Negotiating space for local interpretation

Ethics arise from within a cultural worldview and are consistent with, and reinforce, the values and philosophies of a particular knowledge system. Ethical practice is based on culturally bound concepts that require discussion and negotiation in cross-cultural environments; as one such environment, ethics committees inevitably become a site for cultural negotiation

r UNESCO 2009.

128

Maui Hudson

(Durie 1998). Researchers who situate their research within a M aori or indigenous paradigm will nd aspects of their research incongruent with the western-based values of ethics committees. The disparate experiences of gaining ethical approval from both a university ethics committee and a M aori body are discussed by WalshTapiata, who notes that while there are areas of overlap there are also huge cultural chasms. There are two different but equally valid knowledge bases that a person may need to be aware of when undertaking research (Walsh-Tapiata 1998). Cultural interpretations of ethical concepts are not merely related to alternate understandings or knowledge, but often represent a fundamental difference in conceptions of the universe and ways of viewing the world (Hudson 2004a). All forms of culture are in a continual process of hybridity, which Bhabha (1993) describes as the cutting edge of translation and negotiation that occurs between cultures in a place he terms the third space. Ermine et al. (2004) discuss the concept of the ethical space as a way of afrming the existence of differing ontologies, each claiming their own distinct and autonomous view of the world, and each holding a different account of what they see across the cultural border. In this ethical space the opportunity exists to examine conuence and divergence, and allow for critical conversation. Understanding what constitutes the cultural divide between knowledge systems has inuenced the development of the negotiated space as a neutral zone for dialogue (Smith et al. 2008). Maintaining the integrity of spirit of each knowledge base (especially those previously marginalised) is a key part of creating an environment that facilitates a conscious deliberative process of knowledge exchange and critical reection. The negotiated space provides a conceptual framework to approach the creation of new traditional knowledge which is simultaneously something innovative, yet familiar and potentially coherent.

context. Respect for local indigenous knowledge is not an appeal for epistemological relativism but recognition that the explanatory worth of any piece of knowledge will be associated with its usefulness and cultural relevance (Hemara 2006). Tamasese Taisi E (2007) indicates the importance of engaging in meaningful discussions about bioethics in the search for what is ethical in the context of Pacic research. This search for an accommodation of truths reects the tension between power and vulnerability, where what is at stake is both control over the knowledge system and negotiation of the parameters of its application, a condition only too familiar to indigenous peoples. Central to the exercise of self-determination is the right of peoples to construct knowledge in accordance with self-determined denitions of what is real and valuable (Castellano 2004). There have been numerous calls for indigenous communities to articulate their ethical boundaries in terms of research and new technologies. Indigenous peoples have begun to assert their values, ethics and expectations in ethical codes that guide research practice in indigenous communities and situate research ethics in the context of cultural specicity (Castellano 2004; Ermine et al 2004; Powick 2002; Robson 2004; Tipene-Matua 2006). The principles used in these indigenous ethical frameworks are based on three broad themes: respect, control, and reciprocity (Hudson 2004b). Respect in relation to cultural knowledge and traditions entails recognition of indigenous peoples as sovereign entities. Control implies indigenous peoples ability to determine the extent of their involvement and participation in research and negotiate what is acceptable. Reciprocity entails assurances of mutual benet and sharing and distribution within indigenous groups in an equitable manner. Some examples of indigenous research and ethical codes developed are the

Indigenous ethics
Okere et al. (2005) argue that all knowledge is rst of all local knowledge and that a unique genius and distinctive creativity underlie the production of knowledge in any cultural

& Navajo Nation human research code (Navajo Nation Council 1995) & Guidelines for M aori research ethics (Smith 1997) & Guidelines for research with M aori (Health Research Council 2008) & Guide to ethical research practice with Aboriginal and Torres Strait Islanders

r UNESCO 2009.

Collective consent and the ethics of knowledge

129

& & &

&

(Australian Institute of Aboriginal and Torres Strait Islander Studies 2000) Mikmaq ethics watch (Grand Council 2000) Protocols and principles for conducting research in a M aori context (Powick 2002) Values and ethics: guidelines for ethical conduct in Aboriginal and Torres Strait Islander Health Research (National Health and Medical Research Council 2003) Guidelines on Pacic health research (Health Research Council 2005)

The development of research and ethical codes represents a necessary stage in terms of dening ethical behaviour when working in indigenous communities. They provide culturally specic expectations of ethical research practice and, importantly, indicate to ethics committees the issues that indigenous communities consider important and relevant to ethical deliberation. A prominent theme in the indigenous literature is the need to consult community representatives about proposed research.

Mechanisms for collective consent in the ethical review of research

Ethical review, in so far as it attends to the justication for research and the minimisation of harm, does engage in a critical review of research strategy and the potential validity of the results. In this respect it is de facto a source of the evaluation of research design and not just of ethical practices. By consulting members of indigenous communities, researchers can identify potential harm to persons with a shared social afliation, especially harm that outsiders may be poorly positioned to anticipate (Hudson et al. 2007; Sharp and Foster 2007; Tipene-Matua 2006). Currently, issues of external ethicality or community-based interests are assessed by ethics committees. In this regard, ethics committees, comprising members of the community not participants in the project, provide a form of consent by a collective and give permission for the research project to proceed. Generally speaking, the members of an ethics committee will not be from the communities where the research projects take place, which results in two

major drawbacks. Firstly, ethics committees in New Zealand are appointed by the Minister of Health and have not been mandated by the communities being researched to speak on their behalf. Secondly, there is no connection between the ethical approval process and the subsequent responsibilities of the community to monitor the practices and behaviour of researchers in their midst. This is particularly important given the examples of unethical research practice, in ethically approved studies, that have occurred throughout the Pacic region (Mead and Ratuva 2007). In the context of ethical practice it appears that the researchers ethics may be as relevant as the research ethics. In New Zealand, consultation with M aori and a locality assessment are the mechanisms by which ethics committees assess how well researchers have engaged with local communities and considered their assessment of the relevance and usefulness of the project (Ministry of Health 2006). The consultation process is intended to support evaluation of external ethicality and negotiation of outcomes. Researchers are encouraged to consult early, as the extent to which any particular research project will contribute to M aori health and development will be dependent to some extent on how research questions are framed and developed (Sporle and Koea 2004a), and consultation enables direct involvement in the framing of the research protocol. Consideration of M aori is valuable even when the primary outcome of a research project may not seem directly relevant; collection of ethnicity data and oversampling of the M aori participant population may provide useful secondary outcomes (Hudson 2004a). The appropriateness of the consultation process will be dependent on three main factors: which M aori group(s) are consulted, the topics for consultation and how the consultation takes place. For M aori, recognition of hapu % and iwi (sub-tribes and tribes) within the area where the study takes place is an important consideration (Hudson et al. 2007). However, the community can be dened in relation to cultural or social afliations, geographical groups or communities of interest (National Health and Medical Research Council 2003; Sharp and Foster 2007). Each community or party may have different expectations of the consultation process. To develop the most effective relationship, consultation should afford communities opportunities

r UNESCO 2009.

130

Maui Hudson

for input into the purposes and proposed outcomes of the research. This approach is more likely to produce results that align closely with the needs of the community (Hudson 2004a). Topics of importance should be raised explicitly, as relationships in the inter-cultural setting are inuenced as much by what is not said as by what is said (Anderson et al. 2003). While the consultation model represents an improvement in research practice and ethical review, consultation itself does not always happen in an appropriate manner. Limited cultural awareness, imposition of short time frames to respond, disrespect, dishonesty, power differences and failure to speak with the right or appropriate people can all contribute towards consultation outcomes that the community nds less than satisfactory. In New Zealand the power within the consultation process sits squarely with institutions rather than the community, reinforcing perceptions that ethical review is as much about shielding research institutes from liability as protecting participants (Denzin 2003). Institutions are mandated by the Operational Standard (Ministry of Health 2006) to develop and monitor their own policies of consultation and negotiation with M aori (Sporle and Koea 2004b). If the aim of consultation is for research to contribute as much as possible to an improvement in M aori health and well-being (Health Resource Council of New Zealand 2008) then it makes sense to ensure that it is as robust as possible. While some form of community consultation is increasingly endorsed by many research guidelines, there is much less agreement on the need for formal community approval or group consent (Sharp and Foster 2007). Concerns about mandate, representation and the privileging of group decisions over individual autonomy represent the main practical and philosophical challenges to acceptance of some form of collective consent. Many social and cultural afliations have representative structures with some form of community mandate and responsibilities to act in the best interests of respective groups. Dissenting voices can always be found, as in the politics of any local or central government, but this does not necessarily diminish the authority held by that body. Indigenous communities, in particular, maintain strong afliations to various tribal community structures, each with their own decision-making

responsibilities. The key point for the researcher to determine is which group has the mandate and is the most appropriate to make decisions in the context of research (Hudson 2004a). Discussions on collective and individual rights with regard to decision-making tend to become caught up in disputes over the ability to consent to or decide not to participate in research on behalf of others. This situates the conversation in a polemic that is resolved only by appealing to cultural preferences. A more logical approach is to consider which ethical issues can be usefully considered and consented to by an individual, and which ethical issues require community engagement. The concepts of internal and external ethicality allow for a useful distinction between ethical principles relevant to whether individual or collective consent is required. These types of consent are relevant at different stages of the research process; a collective is likely to be involved in early decisions about the appropriateness of the study and an individual will decide during the implementation of the research whether or not to participate. The negotiated space enables meaningful engagement with communities to surface, at which time they can discuss and agree on the ethical parameters of relationships between individuals, collectives and researchers. Current protocols and expectations of consultation mirror this situation. However reframing consultation as collective consent greatly increases the signicance and accountability of the consultative process for both the researcher and the consulted person or group. Individual M aori are often invited by colleagues to review research protocols as part of the ethical requirements to consult with M aori. While the formal or informal input of M aori colleagues as part of the development of a project is valuable, this does not constitute collective consent. Although an individual may sign off on a research proposal, in the case of collective consent, that person has authority to do so only as a representative with the mandate of the community to act in that capacity, and who is accountable to them if they fail to act in their best interests. In this regard, the process of gaining collective consent is effectively the same as for consultation, the main difference being the greater responsibility to involve the most appropriate people in the process. The use of collective

r UNESCO 2009.

Collective consent and the ethics of knowledge

131

consent in this manner focuses on consultation as a mechanism for improving research relevance and raises the standard in the same way that the notion of defensibility, in free and prior informed consent, expects a more stringent and accountable process of engagement with individual participants.

Conclusion
As indigenous cultures are drawn into the global community, the contact provides both the potential for culture clashes and an opportunity for exchange. Cross-cultural research provides fertile space for the misinterpretation of language and values. The apparent sophistication of western knowledge systems and ethical frameworks, underpinned by universally applicable rules and laws, often overlooks their cultural bias and epistemic positioning. Ethical review, in

particular, must be cognisant of cultural difference as it provides the moral mandate for researchers to invade indigenous places and spaces in the search for new knowledge and understanding. Ethical principles are often, in fact, shared across diverse cultures; however the application of these global principles requires their interpretation in the context of local values and philosophies. There is a need for negotiated ethical spaces where the relationships between shared global understandings and specic local interpretations can be facilitated. In the case of informed consent, recognising mechanisms of collective consent that provide a more robust process for evaluating the outcomes of research for the community (issues of external ethicality) would be welcomed by many indigenous communities. If the aim is to enhance international ethical research practice, then surely those practices must be measured against the expectations of the community within which the research takes place.

References
AHURIRI-DRISCOLL, A., HUDSON, M., FOOTE, J., HEPI, M., ROGERSKOROHEKE, M., TAIMONA, H., TIPA, G. AND NORTH, N. (Te Riu o Hokianga team) and Lea, R., Tipene-Matua, B. and Symes, J. (Rakaipaaka Health and Ancestry Study) 2007. Scientic collaborative research with M aori communities: kaupapa or ku % papa M aori?, AlterNative. An International Journal of indigenous Scholarship, 3 (2), 6081. AKSOY, S. AND TENIK, A. 2002. The four principles of bioethics as found in 13th century Muslim scholar Malwanas teachings, BMC Medical Ethics, 3 (4), doi: 10.1186/1472-6939-34. ANDERSON, I., GRIEW, R. AND MCAULLAY, D. 2003. Ethics guidelines, health research and Indigenous Australians, New Zealand Bioethics Journal, 4 (1), 2029. AUSTRALIAN INSTITUTE OF ABORIGINAL AND TORRES STRAIT ISLANDER STUDIES 2000. Guidelines for ethical research in Indigenous studies. Canberra: AIATSIS. Available online at http:// www.austlii.edu.au/au/journals/ AILR/2003/12.html#Heading3 [Accessed 12 November 2009]. BEAUCHAMP, T. L. AND CHILDRESS, J. F. 1994. Principles of biomedical ethics. New York: Oxford University Press. BHABHA, H. 1993. Cultures in between (concept of culture), Artforum International, 32 (1), 167171. CASTELLANO, M. B. 2004. The ethics of Aboriginal research, Journal of Aboriginal Health. January pp. 98114. Available online at http://www.naho.ca/ english/pdf/journal_p98-114.pdf [Accessed 28 October 2009]. CRAM, F. 2003. Preliminary discussions with Maori key informants, 10. Wellington: National Ethics Advisory Committee. DENZIN, N. 2003. IRBS and the turn of Indigenous research, Ethics. Illinois Conference Proceedings. Available online at http://www.emeraldinsight.com/ Insight/viewContentItem. do;jsessionid =CCE7E46FC F361BB8D48137B36 5FFFF2C?contentType= Book&contentId=1761842 [Accessed 28 October 2009]. DURIE, A. 1998. Me tipu ake te pono: Maori research, ethicality and development, Te Oru Rangahau: Maori Research and Development Conference. Auckland: Massey University Printery: 257263. ERMINE, W., SINCLAIR, R. AND JEFFERY, B. 2004. The ethics of

r UNESCO 2009.

132

Maui Hudson

research involving Indigenous peoples. Report of the Indigenous Peoples Health Research Centre to the Interagency Advisory Panel on Research Ethics. Saskatoon. GRAND COUNCIL 2000. Mikmaq ethics watch. Sydney: Mikmaq College Institute. Available online at http://mrc.uccb.ns.ca/ prinpro.html [Accessed 28 October 2009]. HEALTH RESEARCH COUNCIL OF NEW ZEALAND 2005. Guidelines on Pacic health research, Auckland: Health Research Council. Available online at http://www.hrc.govt.nz/ assets/pdfs/publications/ May%202005%20Pac%20 Guidelines.pdf [Accessed 5 May 2008]. HEALTH RESEARCH COUNCIL OF NEW ZEALAND, 2008. Guidelines for researchers on health research involving Maori. Available online at http://www.hrc.govt.nz/assets/ pdfs/publications/MHGuidelines% 202008%20FINAL. pdf [Accessed 28 October 2009]. HEMARA, W. 2006. Tikanga Maori, Matauranga Maori and bioethics: a literature review. Report to the Bioethics Council. Wellington: Mauriora ki te Ao Living Universe Ltd. HUDSON, M. 2004a. He matatika M aori: M aori and ethical review in health research. Unpublished masters thesis. Auckland: Auckland University of Technology. HUDSON, M. 2004b. A M aori perspective on ethical review in (health) research, Tikanga Rangahau M atauranga Tuku Iho: Traditional Knowledge and Research Ethics Conference Proceedings. Nga Pae o te Maramatanga. Auckland. 1012 June 2004, Te Papa Tongarewa, Wellington, NZ HUDSON, M., AHURIRI-DRISCOLL, A., LEA, M. AND LEA, R. 2007. Whakapapa: a foundation for genetic research, Journal of Bioethical Inquiry, 4 (1), 4349.

MEAD, A. AND RATUVA, S., eds 2007. Pacic genes and life patents: pacic indigenous experiences and analysis of the commodication and ownership of life. Wellington: Call of the Earth Llamado de la Tierra and the United Nations University Institute of Advanced Studies. MILA-SCHAAF, K. 2007 Key Pacic themes. Discussion document. Pacic Ethics of Knowledge Production Conference 2006, Dunedin, 1214 February. MINISTRY OF HEALTH 2006. Operational standard for ethics committees. Wellington: Ministry of Health. NATIONAL HEALTH AND MEDICAL RESEARCH COUNCIL 2003. Values and ethics: guidelines for ethical conduct in Aboriginal and Torres Strait Islander health research. Canberra: National Health and Medical Research Council. NAVAJO NATION COUNCIL 1995. Navajo Nation human research code, Navajo Nation Council.Codesira. Available online at http://www.codesria.org/Links/ Publications/ad3_05/ njoku_devisch.pdf [Accessed 28 October 2009]. OKERE, T., NJOKU, C. A. AND DEVISCH, R. 2005. All knowledge is rst of all local knowledge: an introduction, Africa Development, 30 (3), 119. OGUZ, N. Y. 2003. Research ethics committees in developing countries and informed consent: with special reference to Turkey, Journal of Laboratory Clinical Medicine, 141 (5), 292296. POWICK, K. 2002. Nga take matatika mo te mahi rangahau Maori. Maori research ethics: a literature review of the ethical issues and implications of kaupapa Maori research and research involving Maori for researchers, supervisors and ethics committees. Hamilton: School of Education, University of Waikato. ROBSON, R. 2004. M aori framework for ethical review of health and disability research. A

scoping report to the National Advisory Committee on Health and Disability Ethics. Wellington: National Ethics Advisory Committee.
AND

SCOTT, A., PHILLIPS, H., MOORE, A. DU PLESSIS, R. 2005. Ethics in practice: conversations about biobanks, Critical Public Health, 15 (4), 359368.

SHARP, R. R. AND FOSTER, M. W. 2007. Grappling with groups: protecting collective interests in biomedical research, Journal of Medicine and Philosophy, 32 (4), 321337. SMITH, L. T. 1997. Ng a Aho o te K akahu M atauranga. Unpublished PhD. Auckland: University of Auckland. SMITH, L. T., HUDSON, M., TIAKIWAI, S. J. AND HEMI, M. 2008. The negotiated space. Unpublished manuscript. Te Hau Mihi Ata: M atauranga M aori, Science and Biotechnology. Available from the researchers. SPORLE, A. AND KOEA, J. 2004a. Maori responsiveness in health and medical research: key issues for researchers (Part 1), New Zealand Medical Journal, 117 (1199). Available online at http:// www.hawaii.edu/hivandaids/ Maori_Responsiveness_in_Health _and_Medical_Research__ Key_Issues_for_Researchers_ (Part_1).pdf [Accessed 28 October 2009]. SPORLE, A. AND KOEA, J. 2004b. Maori responsiveness in health and medical research: clarifying the roles of researcher and institution, New Zealand Medical Journal, 117 (1199). Available online at http:// www.nzma.org.nz/journal/1171199/998/ [Accessed 28 October 2009]. TAMASESE TAISI EFI, TUI ATUA TUPUA 2007. Bio-ethics and the Samoan indigenous reference. Keynote address, UNESCO Pacic Regional Workshop on the Ethics of Knowledge Production. Samoa Tofamamao Centre, Apia, Samoa 1215th November.

r UNESCO 2009.

Collective consent and the ethics of knowledge

133

TIPENE-MATUA, B. 2006. Having honest conversations about the impact of new technologies on indigenous peoples knowledge and values, Proceedings of Matauranga Taketake, Traditional Knowledge Conference. Indigenous Indicators of Well-being: Perspectives, Practices, Solutions. Auckland: Nga Pae o te Maramatanga, 249256.

TSAI, D. F. 1999. Ancient Chinese medical ethics and the four principles of biomedical ethics, Journal of Medical Ethics, 25 (4), 315321.

UNESCO 2006. Universal declaration on bioethics and human rights. Paris: UNESCO.

WALSH-TAPIATA, W. 1998. Research within your own Iwi what are some of the issues? Te Oru Rangahau: Maori Research and Development Conference. Auckland: Massey University Printery. North, New Zealand 79 July 1998.

r UNESCO 2009.