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Mori have been contributing to the debates about research ethics1-3 and genetics4-8 for a number of years. Several studies exploring Mori views on genetic research9-13 and biobanking14,15 have described Mori perspectives on these types of research and the key issues that arise, including cultural issues,16,17 governance issues,18,19 consent processes,20 social equipoise,21,22 distribution of risks and benefits,2,23 tissue storage,16,24 analysis10,23 and interpretation of results.10,20,23Te Ara Tika Guidelines on Mori Research Ethics: A framework for researchers and ethics committee members2 established a framework for understanding the diverse views that inform Mori ethical deliberations and noted the heightened ethical sensitivities that exist for Mori in relation to the use of tissue and genetic information. However, the document did not provide substantive comment or practical advice for genetic researchers or biobanks in relation to Mori cultural, ethical and legal parameters for these activities. Mori continue to consent for their tissue to be used in biomedical research projects,4,10,11,13 so it is important that their expectations of ethical research behaviour are reflected in developing guidelines. The Te Mata Ira research project explored the issues that Mori encounter when they choose to be involved in genomic research and biobanking with the aim of providing more substantive culturally appropriate guidance to researchers and communities alike.BackgroundGenomic research represents a new frontier for health research and provides a platform for personalised medicines (pharmacogenomics). The scale of biological samples required to adequately power genomic studies has led to significant growth, nationally and internationally, of both biobanks and genomic databases.25-29 Though genomic research has yet to fulfil the promise of personalised medicine, ethical discussions within Mori communities4,9,11,30 and among ethicists in the international domain31-34 are evolving to meet emerging challenges and technologies. Subsequently, there has been a proliferation of international genetic databases25,35 and national34,36 and international guidance documents37-39 suggesting various ways for governing them. Yet commercialisation practices and the return of individual results varies.14,28 Nevertheless, it is vital to include Indigenous ethical principles in genomic research, particularly given the existing storage of Indigenous genetic material and because it is possible that genomics could play a role in future contests over Indigenous people s claims of identity and rights.40-42Ethical controversies surrounding genetic studies, like the human genome diversity project, 23 the warrior gene 43,44 and the Arizona State University settlement with the Havusupai, a Native American tribe,45 have prompted Indigenous critiques. These have included research by Indigenous Peoples Council on biocolonialism about the Havasupai15,46-48 and work undertaken by the National Congress of American Indians (NCAI) studying views of genetic health research in Indian Country.15,49-51 Researchers are also recognising the need for change, and a recent Nature Reviews Genetics paper by Gottweis, Chen52 called for biobanks to address issues of trust, benefit sharing, data security, privacy and practicing reciprocity.The use of biobanks and sharing of research data across projects are also being discussed in New Zealand as a cost-saving measure, particularly in relation to a number of high-cost medicines associated with cancer treatment. In the past two years the Health Research Council of New Zealand (HRC) Ethics Committee was approached for guidance on both secondary and unspecified future use of data and human tissue as well as appropriate use of information databases, prompting the HRC to consider developing a data-sharing policy. Recent research by New Zealand s Virtual Institute of Statistical Genetics has also shown that sample sizes of 1,000,000 10,000,000 are needed to obtain sufficient evidence for association, meaning extensive data sharing, including that relating to Mori genetic material, is required for genome-wide association studies.26 In many instances the data being shared will be based on biological samples (genetic/genomic information) and pressure is increasing for anonymous datasets be placed in the public domain as a prerequisite for publication. Similarly, the linking of computerised medical records with genetic/genomic information and population-level genome sequencing is also on the horizon.The speed of technological advance is outpacing the development of ethical oversight and it is apparent that in New Zealand much of the guidance on genetic research and data sharing is not specific enough to deal with emerging ethical issues associated with the types of genomic research now possible. The recent establishment of the Auckland Regional Tissue Bank (Auckland), Rare Diseases Tissue Bank (Dunedin), Melanoma Tissue Bank (Dunedin) and the Centre for Brain Research Biobank (Auckland) illustrate a shift towards developing more formal tissue storage facilities and the provision of more transparent consent processes for the ongoing use of tissue in research including genetic and genomic studies.MethodsThree sets of participants contributed views to gain understanding about the genomic research and biobanking contexts, how Indigenous populations have fared in these contexts and strategies to regulate these contexts. Semi-structured interviews were held with seven Te Mata Ira International Advisory Panel (IAP) members until saturation was achieved. The panel members, who belong to Indigenous communities in Australia, Hawaii, Canada, US and New Zealand, represent a diverse range of research expertise in Indigenous health, health policy, medical genomics and bioinformatics. Given their diverse locations, IAP members were interviewed by telephone or skype. Five stakeholder workshops were conducted at Auckland, Christchurch and Dunedin (n=5). Two were science focussed workshops aimed at genetic researchers and biobank personnel (n=27, both Mori and non-Mori), and three were Mori focussed workshops to gain views from Mori who have a role in health research, ethics or genetics (n=31).The three key questions asked in the interviews and workshops were; Why should Mori/Indigenous communities participate in biobanking and/or genomic research? What are the key issues for Mori/Indigenous participation in biobanking and genomic research? How might we address these issues? The interviews and workshops were digitally audio-recorded, transcribed and summarised. Summaries were checked with IAP members to enhance validity. A guided thematic analysis the process of coding empirical material to the research questions and emerging themes53,54 was conducted across several key domains, including but not limited to potential benefits of participation, barriers to participation and expectations of behaviour. Answers to the first and second questions are detailed below. Because key informants answered question three while discussing issues prompted by question two, these findings are presented together.FindingsWhy should Mori participate in biobanking and genomic research?The question of whether it is useful or appropriate for Indigenous/Mori communities to engage with new technologies continues to be the subject of discussion and debate. The views advanced by the three groups of participants reflect a wide range of opinions on the value of participation in genomic research and biobanking initiatives. The key opportunities outlined by participants provided by engaging in genomic research and biobanking are the potential; to derive health outcomes to increase understanding and trust in the science and scientists to improve processes of research to protect broader interests of the Mori community to realise other opportunities Potential health outcomes were described largely in relation to lessening the incidence and prevalence of disease, along with recognising that genomic medicine may be another type of health care that Mori communities can benefit from. Mori key informants considered the value of participation in two distinct ways, namely, individual value and community value. At an individual level, key informants spoke about the potential to enhance health outcomes for the individual seeking treatment and expressed a keen sense of altruism in wanting to be part of something that they believed may help others outside of their immediate family. Mori participation in genomic research was also described by some as a potential tool for reducing inequalities but only if it is applied at both the individual and the community levels in an appropriate manner, along with a clear understanding of the limitations of genomic research. The optimism about potential health gains was balanced by a recognition that genetic contributions towards health outcomes are only part of the answer and will be situated within a broader context of social determinants.What is the ethical balance between doing genetic research and what we know about the impacts of inequalities and poverty? (Mori key informant, workshop)The perceived link between enhanced treatment for disease and participation in genomic research was particularly pronounced in the discussion within the science workshops. Key informants in the science workshops explained that the current limited evidence on genetic variation between Mori tissue and other populations provides a unique opportunity and motivation for scientists to work with these communities in biomarker discovery. Mori participation is also seen as necessary to provide representative population wide data, something necessary to ensure that Mori communities directly benefit from genomic medicine in the future. Along with other limitations, Mori would only benefit if there were sufficient numbers of Mori participants and statistical power for Mori specific analyses to be conducted. Key informants in the science workshops also suggested increasing Mori samples in biobanks would provide greater opportunities for Mori specific health priorities to be researched. They noted that Mori participation in genomic research and biobanking projects would require a greater level of trust in the people and processes responsible for the storage and use of tissue samples, as well as a greater level of transparency and culturally appropriate engagement from scientists.Participation as a potential opportunity and facilitator of other community development and capacity building initiatives was also discussed. The benefits described included those arising through greater control such as ownership of intellectual as well as biological property, and were described in a way that strategically positions Indigenous communities as decision-makers including supporting aspirations for sovereignty.Key informants also felt that it is important to consider the factors that motivate whnau to get involved in genetic research and how this impacts on their ability to ask critical questions about the nature of the project. Families with genetic concerns participate in the interest of their family s health as their primary focus is coping with the condition not how their genetic data might be used in the future.If I ve got it then I want my kids to be protected [from the disease] so it was a real whakapapa thing. It wasn t a raced based, community based, [or] Iwi based thing at all. They did it [genetic testing] because they thought, \u201cIf I have something genetically wrong and my kid inherits it\u2026then I want my kid to know that and for that to drive practice\u201d (Mori key informant, workshop).Generally, the key informants that participated in the science workshops were more positive about the value of Mori participation in biobanking and genomic research in terms of improving the science and ensuring outcomes from research benefit Mori. The Indigenous Advisory Panel and the key informants at the Mori workshops were more reticent about the value of participation but recognised it has direct benefit for specific individuals and families, and that other collective interests could be addressed if Mori were more involved in governance and decision making to ensure the wider health benefits are realised.What are the key issues related to Mori participation in biobanking and genomic research?Protection of Mori rights and interestsKey informants described a legacy of mistrust created by examples of unethical engagement with Indigenous peoples in biomedical research, and this motivates Mori to evaluate genomic research projects with a greater degree of scrutiny. Mori research principles promoting community participation, culturally appropriate protocols and Mori involvement in research and governance provide the foundation for sound partnerships and quality research. Key informants spoke about the need to protect Mori interests through Mori control promoting concepts of power-sharing over benefit-sharing.We ll get this right if we know that the control sits with Mori. Not individual Mori because actually that s a personal decision that they re making based on a personal perspective\u2026But this stuff has to occur on a much bigger scale and it has to be able to shift this down [to the level of Mori community] otherwise it s of no value (Mori workshop).Focus on Mori and Indigenous health prioritiesKey informants questioned whether genomic research is what is needed to change negative health outcomes for Mori. Key informants recognised the usefulness of genetic information for some conditions; however, they were less convinced of its utility for key Mori health priorities like diabetes or cardiovascular disease where multiple genes and environmental factors contribute to its expression. If health status is considered within a determinants of health framework then there are other places you would put resources to address environmental and systemic factors impacting on individuals and populations. Key informants in the Mori workshops generally thought that prioritising funding for genomic research would divert resources away from public health research, which they believe had more immediate benefits for Mori communities.They ve got this information that they might have this gene contributing to whatever disease but then what do they do with that information? How can they use that to improve health? (Key informant interview).We are at the intervention stage in public health. So when you re putting resources into this unknown area when we ve got all this mahi that we should be doing [it is mismatched] (Key informant, Mori workshop).Robustness of genetic research methodsA number of the key informants had high levels of research expertise and were able to critique the framing and methods used in specific genomic research projects. Some of the concerns expressed include;a) the construction of racial or ethnic groupings for genetic comparisons,b) the attribution of familial characteristics to larger groupings,c) the analysis and interpretation of results andd) an interest in the scientific novelty rather than clinical application.Inappropriate interpretation of results, as occurred with the Warrior Gene hypothesis where polymorphisms in the monoamine oxidase A gene, were linked to aggressive behaviour in Mori, stigmatised the Mori community and reinforced negative stereotypes of researchers.20,55 One of the key challenges for genomic researchers when communicating results of genetic studies in specific ethnic populations is to ensure people understand that the use of the group to help identify a functional genes or phenotype does not mean that the phenotype is an ethnic marker, that is, a Mori gene. As a key informant in one of the Mori workshops explained, they had reframed their views of race and genetics on the basis of learning basic knowledge on genetics and admixture.Genetics is not race based; it s familial. Mori are an admixed population\u2026How do you know that that s our Mori genes? How come it s not our Scottish genes? (Mori key informant, workshop).Because if you look at the Human Genome Project, for instance, we re from the family of Maui apparently\u2026It s pretty much all Polynesian, brown people\u2026but it just seems so racialised\u2026They never find bad genes in the white population. It s always in the Mori group (Mori key informant, workshop).Key informants also described how genetic analyses rarely recognised the broader social context and distracted attention from social determinants of health, including the impact of colonisation and poverty.The truth is we didn t have diabetes before we had a western diet, so how can that be genetically right? Pakeha get diabetes and they get gout so we use prevalence and incidence rates to again racialise an illness which really is an illness of poverty\u2026In genetics they never discuss poverty (Mori key informant, workshop).Control over samples and dataKey informants described the importance of Mori involvement in decisions over access, storage and use of tissue and data. They could see the potential for Mori participation in genomic research shifting from being a subject of research and a provider of tissue towards greater participation in the research design and governance. Control over tissue and data ensures that it is used for research that directly benefits the community and in a manner that recognises its cultural significance. They spoke about the need for Mori to have more influence over the use of data and the direction of research.Stewardship requires access to research and data to support developments within our communities. Engagement with research is a key activity related to accessing quality data in support of our aspirations for sovereignty (Key informant interview).Some groups are exercising sovereignty by being involved in decisions on genetic research and biobanking (Key informant interview).Increasing Mori participation in regulatory roles and strengthening Mori governance was potential mechanisms to improve the level of monitoring for researchers and biobanks in possession of Mori tissue. Possession of tissue was viewed as carrying strong implications in terms of stewardship and care. Key informants stated that it is important to be involved in the development of policies for these groups.I think it comes back to accountability because whoever owns the keys to the freezer typically determines what happens to the samples, and if the person who had the keys to the freezer is not keeping [researchers] accountable to what was agreed on in the first place then really they can do whatever they want (Mori key informant, workshop).With the biobank\u2026you almost need\u2026like a Mori with veto powers on a committee that evaluates [the research] and says, \u201cLook if you don t use the tissue for the purpose you signed up for in the beginning then nothing gets published because you\u2026had the ability to be able to say I don t want this published\u201d. But I mean an Iwi group won t have the same [power] (Mori key informant, workshop).Benefit sharingBenefit sharing is an important element of the research relationship. Key informants recognised that benefits would not always be direct health improvements but thought there was scope to explore other possibilities through education, capacity building and intellectual property. Ownership of material and data was discussed as an issue related to potential development of commercial products. Key informants stated that both researchers and participants can realise benefits from a project and a balance needs to be found to ensure communities receive an equitable share of the benefits produced through genomic research.So we need to think about it in the broader context, and then there s the ethics and the quality of the research, partnerships...and negotiation of benefits (International Advisory Panel).Expectations of consultation and engagementA desire to protect Mori/Indigenous rights and interests through the entire process of research informs their expectations of consultation. Key informants discussed the place of community engagement in the development of projects and the need for researchers to talk to the right individuals within communities. Appropriate consultation will provide an opportunity to negotiate issues of research design, sampling strategies, language, cultural support, research governance, review processes and publication protocols. Overall the use of appropriate research design was seen as a significant factor in the protection of Mori and Indigenous interests. Key informants spoke about Mori values informing the parameters around which tissue can be used. Health research has a number of best practice models which emphasise the importance of early discussions with Iwi/Mori, which is especially relevant for this context given the complex nature of the studies and the ethical issues associated with it.This is where having a conversation with Iwi becomes really important\u2026We have groups that\u2026don t necessarily know what it is they are saying yes to (Mori key informant, workshop).Expectations of consentKey informants suggested that community consent was required to gain support for the genomic project taking place. Mori communities needed access to someone who could translate genomic research jargon into practical terms for consideration. The translator would have the ability to explain what the research is likely to provide to the community, what will not be provided and any risks associated with participation. Access to independent resources and guidelines would create a more transparent and safer process for communities.You need somebody on your own team, Iwi need someone for themselves that actually can broker with the geneticists\u2026you actually need someone who can talk the geneticist s language that actually understands what methods should be used (Mori key informant, workshop).If you want to explore that uniqueness of a certain collective then you actually have to have that collectives consent, that way you can go forward...The academic freedom is seen as the sort of guiding principle by the researcher, like I don t need to be told by some community how to do my science (Non-Mori key informant, interview).Key informants felt that individual consent provides a mechanism to both allow participation while also restricting certain activities that participants might not be comfortable with like sending tissue overseas and consent for future use. It is important to consider the timing of consent and allowing individuals time to discuss risks and benefits with family and friends. The recruitment process is a key part of the gaining informed consent. Mori involved in the direct recruitment of participants often felt their connection to those communities may have influenced peoples decision to participate more than the information provided. This can create a tension for the Mori recruiter who becomes responsible for the tissue, in the eyes of the community, even if they have no decision-making power within the project team.Once again, who was the person who was getting the consent? It was actually Mori to Mori. You re sitting there, you re talking about it [genetic research project], we re selling it and they re buying in (Mori key informant, science workshop).To me the biggest lesson I ve learnt is that we shouldn t say anything. We should put them in front of our people and if our people don t like them they say no and then that s how it is (Mori key informant, science workshop).Ongoing communication and feedbackKey informants explained how a lack of knowledge is seen as a key factor in creating barriers for both researchers and Mori participants. Key informants in the science workshops perceived that Mori reluctance to participate in genomic research is due to not knowing how genomic research works and that this can also lead to suspicion and misunderstanding. They also spoke about having a lack of knowledge on how to engage with Mori to ensure that effective consultation and negotiation is part of the process of research and biobanking. In contrast, key informants in the Mori workshops expressed frustration with the lack of feedback and information about the progress and outcomes of research projects and stated that this reinforced negative sentiments about researcher commitment to their communities.Increasing the level of genetic literacy was identified as important in the context of having communities make more informed decisions about participation in genomic research. Education initiatives to increase awareness were seen as vital for both Mori and science communities. Increasing levels of cultural literacy within science communities should lead to a greater acknowledgement and respect for Mori views within the research project, enabling researchers to develop research questions that align with community health priorities, and implementation of research processes that support opportunities for Mori development.[Guidance for scientists is important] to increase the comfort level of Indigenous people who are participants in biobanking and genomic research (Mori key informant interview, workshop).DiscussionThere are a small number of established biobanks in New Zealand that manage tissue for research purposes including genomic research but a much larger number of informal biobanks , research-based tissue collections, which have samples that have been consented for future use. As there is no register for biobanks or research-based tissue collections there is no way of knowing how many samples are in storage or how many of them have been provided by Mori participants. Few projects have specifically collected samples from Mori populations for genomic research, in part due to the challenge of ensuring Mori support. Notable exceptions include the Gout and Related Conditions Project in Ngti Porou, the Rakaipaaka Health and Ancestry Study and Te Wai o Rona based in the Waikato. While Mori views on genetic research and biotechnologies indicate an increasing willingness to engage if there is a health benefit for the family or community,11,18,66 it was evident in the workshops that communities are also becoming more critical about the nature of participation and expectations of researchers.Mori communities are often uneasy about participating in genomic research, based on past experiences where projects have operated outside the ethical boundaries agreed with communities. Projects led by Arizona State University and Institute of Environmental Science and Research did not end well for Indigenous communities and highlight the potential risks associated with engagement in genomic research. Researchers at Arizona State University (ASU) gathered blood samples from Havasupai Tribe in Arizona to search for a link to diabetes, but used the samples to look for other diseases and genetic markers. Researchers at the Institute of Environmental Science and Research Ltd initiated a Health and Ancestry study with the Ngti Rakaipaaka tribe in New Zealand. The primary researcher was the protagonist of the Warrior Gene and while this incident was not directly associated with the study, it led to its demise. Indigenous and Mori researchers, and communities themselves are becoming increasingly vigilant in their expectations of research partners.The value of participationMori views on the potential benefits of biobanking, genetics and genomic research are largely related to helping others. Mori cultural concepts, in particular the concept of manaakitanga (caring, kindness), is said to increase the likelihood of Mori agreeing to participate in genetic research.14 Believing that participation will help a family member or someone else in the community who is unwell is a key motivator for Mori participation in health-related biotechnologies.11 Mori views on the value of partnership between Mori communities and genetic researchers are shown to be positive if the research is seen to be of benefit, particularly in areas such as predictive cancer testing.17While there are concerns raised over the reductionist nature of genetics, the value of genetic testing for Mori may lie in finding solutions to immediate and severe health states18 and through predictive genetic tests that identify risks of developing disease.17 However, Mori recognise that health inequalities may not be adequately explained by genetics, and one potential consequence of genetic research is that it could contribute to diminishing support for equity-based policies that recognise the role of social justice in relation to inequalities.55The challenge of effective participationThe challenges for Mori communities in participating effectively in genomic research and biobanking projects reflect the broader political dynamic relating to Indigenous-State relationships and equitable access to resources, including research. It traverses the interface between mtauranga Mori and science, and touches on the difference between the value associated with biological tissue, a taonga (treasure) in a cultural context and a biological resource in the science community. It is informed by a diverse range of Mori discourses, experiences and worldviews, and as there are numerous opportunities for misinterpretation and misunderstanding, an authentic engagement should be underpinned by clear processes and values.57It is apparent that one of the effects of colonisation is a general marginalisation of Mori communities within the realms of education, limiting Mori capacity and capability to engage in research. This is especially true for the increasingly technical research projects conducted in scientific disciplines. The Mori key informants indicated that there was a general lack of understanding about genomic research and biobanking in their communities and also identified that there were limited opportunities for involvement in the research process. Becoming informed is a significant challenge for both communities engaging with researchers and individuals considering participation in projects. The information imbalance reflects the power imbalance that exists between researchers and com

Summary

Abstract

The aim of the Te Mata Ira project was to explore Mori views on biobanking and genomic research, and to identify ways to address Mori concerns over the collection and use of human tissue. Key informant interviews and workshops were conducted with Mori to identify Mori views in relation to biobanking and genomic research; and, informed by these views, interviews and workshops were conducted with Mori and non-Mori key informants (Indigenous Advisory Panel (IAP) members and science communities) to explore key issues in relation to Mori participation in biobanking and genomic research. Mori key informants identified the following as key deliberations: (1) the tension for Mori between previous well-publicised negative experiences with genomic research and the potential value for whnau and communities as technologies develop, (2) protection of Mori rights and interest, (3) focus on Mori health priorities, (4) control of samples and data, (5) expectations of consultation and consent and (6) a desire for greater feedback and communication. Mori and non-Mori key informants highlighted the need to enhance levels of Mori participation in the governance of genomic research and biobanking initiatives, and acknowledged that only by increasing the level of transparency and accountability in relation to these activities will Mori communities feel that their whakapapa, rights and interests are being appropriately protected.

Aim

Method

Results

Conclusion

Author Information

Maui Hudson, Mori and Indigenous Governance Centre, University of Waikato, Hamilton; Kim Southey, Independent Researcher, Hamilton; Lynley Uerata, Independent Researcher, Hamilton; Angela Beaton, Health and Social Practice, Waikato Institute of Technology, Hamilton; Moe Milne, Independent Researcher, Northland; Khyla Russell, Otago Polytechnic, Waikouaiti; Barry Smith, Planning and Funding, Lakes DHB, Rotorua; Phillip Wilcox, Department of Statistics, University of Otago, Dunedin; Valmaine Toki, Faculty of Law, University of Waikato, Hamilton; Melanie Cheung, Centre for Brain Research, University of Auckland, Auckland, Waiora Port, Independent Researcher, Hamilton.

Acknowledgements

The Te Mata Ira research team would like to extend our sincere thanks and gratitude to the participants who generously contributed the project. Thank you to the Health Research Council of New Zealand who funded the research project (HRC 12/470). Ng mihi ki a koutou katoa.

Correspondence

Maui Hudson, Mori and Indigenous Governance Centre, University of Waikato, Hamilton.

Correspondence Email

maui@waikato.ac.nz

Competing Interests

Kim Southey, Moe Milne, Waiora Port, Maui Hudson and Lynley Uerata report grants from Health Research Council of New Zealand during the conduct of the study. Phillip Wilcox reports grants from the Ministry of Health during the conduct of the study.

-- Cram F. Rangahau Mori: T\u014dna tika, t\u014dna pono. In: Tolich M, editor. Research ethics in Aotearoa. Auckland, New Zealand: Longman; 2001. p. 35-52. Hudson M, Milne M, Reynolds P, Russell K, Smith B. Te Ara Tika - Guidelines for Mori res

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Mori have been contributing to the debates about research ethics1-3 and genetics4-8 for a number of years. Several studies exploring Mori views on genetic research9-13 and biobanking14,15 have described Mori perspectives on these types of research and the key issues that arise, including cultural issues,16,17 governance issues,18,19 consent processes,20 social equipoise,21,22 distribution of risks and benefits,2,23 tissue storage,16,24 analysis10,23 and interpretation of results.10,20,23Te Ara Tika Guidelines on Mori Research Ethics: A framework for researchers and ethics committee members2 established a framework for understanding the diverse views that inform Mori ethical deliberations and noted the heightened ethical sensitivities that exist for Mori in relation to the use of tissue and genetic information. However, the document did not provide substantive comment or practical advice for genetic researchers or biobanks in relation to Mori cultural, ethical and legal parameters for these activities. Mori continue to consent for their tissue to be used in biomedical research projects,4,10,11,13 so it is important that their expectations of ethical research behaviour are reflected in developing guidelines. The Te Mata Ira research project explored the issues that Mori encounter when they choose to be involved in genomic research and biobanking with the aim of providing more substantive culturally appropriate guidance to researchers and communities alike.BackgroundGenomic research represents a new frontier for health research and provides a platform for personalised medicines (pharmacogenomics). The scale of biological samples required to adequately power genomic studies has led to significant growth, nationally and internationally, of both biobanks and genomic databases.25-29 Though genomic research has yet to fulfil the promise of personalised medicine, ethical discussions within Mori communities4,9,11,30 and among ethicists in the international domain31-34 are evolving to meet emerging challenges and technologies. Subsequently, there has been a proliferation of international genetic databases25,35 and national34,36 and international guidance documents37-39 suggesting various ways for governing them. Yet commercialisation practices and the return of individual results varies.14,28 Nevertheless, it is vital to include Indigenous ethical principles in genomic research, particularly given the existing storage of Indigenous genetic material and because it is possible that genomics could play a role in future contests over Indigenous people s claims of identity and rights.40-42Ethical controversies surrounding genetic studies, like the human genome diversity project, 23 the warrior gene 43,44 and the Arizona State University settlement with the Havusupai, a Native American tribe,45 have prompted Indigenous critiques. These have included research by Indigenous Peoples Council on biocolonialism about the Havasupai15,46-48 and work undertaken by the National Congress of American Indians (NCAI) studying views of genetic health research in Indian Country.15,49-51 Researchers are also recognising the need for change, and a recent Nature Reviews Genetics paper by Gottweis, Chen52 called for biobanks to address issues of trust, benefit sharing, data security, privacy and practicing reciprocity.The use of biobanks and sharing of research data across projects are also being discussed in New Zealand as a cost-saving measure, particularly in relation to a number of high-cost medicines associated with cancer treatment. In the past two years the Health Research Council of New Zealand (HRC) Ethics Committee was approached for guidance on both secondary and unspecified future use of data and human tissue as well as appropriate use of information databases, prompting the HRC to consider developing a data-sharing policy. Recent research by New Zealand s Virtual Institute of Statistical Genetics has also shown that sample sizes of 1,000,000 10,000,000 are needed to obtain sufficient evidence for association, meaning extensive data sharing, including that relating to Mori genetic material, is required for genome-wide association studies.26 In many instances the data being shared will be based on biological samples (genetic/genomic information) and pressure is increasing for anonymous datasets be placed in the public domain as a prerequisite for publication. Similarly, the linking of computerised medical records with genetic/genomic information and population-level genome sequencing is also on the horizon.The speed of technological advance is outpacing the development of ethical oversight and it is apparent that in New Zealand much of the guidance on genetic research and data sharing is not specific enough to deal with emerging ethical issues associated with the types of genomic research now possible. The recent establishment of the Auckland Regional Tissue Bank (Auckland), Rare Diseases Tissue Bank (Dunedin), Melanoma Tissue Bank (Dunedin) and the Centre for Brain Research Biobank (Auckland) illustrate a shift towards developing more formal tissue storage facilities and the provision of more transparent consent processes for the ongoing use of tissue in research including genetic and genomic studies.MethodsThree sets of participants contributed views to gain understanding about the genomic research and biobanking contexts, how Indigenous populations have fared in these contexts and strategies to regulate these contexts. Semi-structured interviews were held with seven Te Mata Ira International Advisory Panel (IAP) members until saturation was achieved. The panel members, who belong to Indigenous communities in Australia, Hawaii, Canada, US and New Zealand, represent a diverse range of research expertise in Indigenous health, health policy, medical genomics and bioinformatics. Given their diverse locations, IAP members were interviewed by telephone or skype. Five stakeholder workshops were conducted at Auckland, Christchurch and Dunedin (n=5). Two were science focussed workshops aimed at genetic researchers and biobank personnel (n=27, both Mori and non-Mori), and three were Mori focussed workshops to gain views from Mori who have a role in health research, ethics or genetics (n=31).The three key questions asked in the interviews and workshops were; Why should Mori/Indigenous communities participate in biobanking and/or genomic research? What are the key issues for Mori/Indigenous participation in biobanking and genomic research? How might we address these issues? The interviews and workshops were digitally audio-recorded, transcribed and summarised. Summaries were checked with IAP members to enhance validity. A guided thematic analysis the process of coding empirical material to the research questions and emerging themes53,54 was conducted across several key domains, including but not limited to potential benefits of participation, barriers to participation and expectations of behaviour. Answers to the first and second questions are detailed below. Because key informants answered question three while discussing issues prompted by question two, these findings are presented together.FindingsWhy should Mori participate in biobanking and genomic research?The question of whether it is useful or appropriate for Indigenous/Mori communities to engage with new technologies continues to be the subject of discussion and debate. The views advanced by the three groups of participants reflect a wide range of opinions on the value of participation in genomic research and biobanking initiatives. The key opportunities outlined by participants provided by engaging in genomic research and biobanking are the potential; to derive health outcomes to increase understanding and trust in the science and scientists to improve processes of research to protect broader interests of the Mori community to realise other opportunities Potential health outcomes were described largely in relation to lessening the incidence and prevalence of disease, along with recognising that genomic medicine may be another type of health care that Mori communities can benefit from. Mori key informants considered the value of participation in two distinct ways, namely, individual value and community value. At an individual level, key informants spoke about the potential to enhance health outcomes for the individual seeking treatment and expressed a keen sense of altruism in wanting to be part of something that they believed may help others outside of their immediate family. Mori participation in genomic research was also described by some as a potential tool for reducing inequalities but only if it is applied at both the individual and the community levels in an appropriate manner, along with a clear understanding of the limitations of genomic research. The optimism about potential health gains was balanced by a recognition that genetic contributions towards health outcomes are only part of the answer and will be situated within a broader context of social determinants.What is the ethical balance between doing genetic research and what we know about the impacts of inequalities and poverty? (Mori key informant, workshop)The perceived link between enhanced treatment for disease and participation in genomic research was particularly pronounced in the discussion within the science workshops. Key informants in the science workshops explained that the current limited evidence on genetic variation between Mori tissue and other populations provides a unique opportunity and motivation for scientists to work with these communities in biomarker discovery. Mori participation is also seen as necessary to provide representative population wide data, something necessary to ensure that Mori communities directly benefit from genomic medicine in the future. Along with other limitations, Mori would only benefit if there were sufficient numbers of Mori participants and statistical power for Mori specific analyses to be conducted. Key informants in the science workshops also suggested increasing Mori samples in biobanks would provide greater opportunities for Mori specific health priorities to be researched. They noted that Mori participation in genomic research and biobanking projects would require a greater level of trust in the people and processes responsible for the storage and use of tissue samples, as well as a greater level of transparency and culturally appropriate engagement from scientists.Participation as a potential opportunity and facilitator of other community development and capacity building initiatives was also discussed. The benefits described included those arising through greater control such as ownership of intellectual as well as biological property, and were described in a way that strategically positions Indigenous communities as decision-makers including supporting aspirations for sovereignty.Key informants also felt that it is important to consider the factors that motivate whnau to get involved in genetic research and how this impacts on their ability to ask critical questions about the nature of the project. Families with genetic concerns participate in the interest of their family s health as their primary focus is coping with the condition not how their genetic data might be used in the future.If I ve got it then I want my kids to be protected [from the disease] so it was a real whakapapa thing. It wasn t a raced based, community based, [or] Iwi based thing at all. They did it [genetic testing] because they thought, \u201cIf I have something genetically wrong and my kid inherits it\u2026then I want my kid to know that and for that to drive practice\u201d (Mori key informant, workshop).Generally, the key informants that participated in the science workshops were more positive about the value of Mori participation in biobanking and genomic research in terms of improving the science and ensuring outcomes from research benefit Mori. The Indigenous Advisory Panel and the key informants at the Mori workshops were more reticent about the value of participation but recognised it has direct benefit for specific individuals and families, and that other collective interests could be addressed if Mori were more involved in governance and decision making to ensure the wider health benefits are realised.What are the key issues related to Mori participation in biobanking and genomic research?Protection of Mori rights and interestsKey informants described a legacy of mistrust created by examples of unethical engagement with Indigenous peoples in biomedical research, and this motivates Mori to evaluate genomic research projects with a greater degree of scrutiny. Mori research principles promoting community participation, culturally appropriate protocols and Mori involvement in research and governance provide the foundation for sound partnerships and quality research. Key informants spoke about the need to protect Mori interests through Mori control promoting concepts of power-sharing over benefit-sharing.We ll get this right if we know that the control sits with Mori. Not individual Mori because actually that s a personal decision that they re making based on a personal perspective\u2026But this stuff has to occur on a much bigger scale and it has to be able to shift this down [to the level of Mori community] otherwise it s of no value (Mori workshop).Focus on Mori and Indigenous health prioritiesKey informants questioned whether genomic research is what is needed to change negative health outcomes for Mori. Key informants recognised the usefulness of genetic information for some conditions; however, they were less convinced of its utility for key Mori health priorities like diabetes or cardiovascular disease where multiple genes and environmental factors contribute to its expression. If health status is considered within a determinants of health framework then there are other places you would put resources to address environmental and systemic factors impacting on individuals and populations. Key informants in the Mori workshops generally thought that prioritising funding for genomic research would divert resources away from public health research, which they believe had more immediate benefits for Mori communities.They ve got this information that they might have this gene contributing to whatever disease but then what do they do with that information? How can they use that to improve health? (Key informant interview).We are at the intervention stage in public health. So when you re putting resources into this unknown area when we ve got all this mahi that we should be doing [it is mismatched] (Key informant, Mori workshop).Robustness of genetic research methodsA number of the key informants had high levels of research expertise and were able to critique the framing and methods used in specific genomic research projects. Some of the concerns expressed include;a) the construction of racial or ethnic groupings for genetic comparisons,b) the attribution of familial characteristics to larger groupings,c) the analysis and interpretation of results andd) an interest in the scientific novelty rather than clinical application.Inappropriate interpretation of results, as occurred with the Warrior Gene hypothesis where polymorphisms in the monoamine oxidase A gene, were linked to aggressive behaviour in Mori, stigmatised the Mori community and reinforced negative stereotypes of researchers.20,55 One of the key challenges for genomic researchers when communicating results of genetic studies in specific ethnic populations is to ensure people understand that the use of the group to help identify a functional genes or phenotype does not mean that the phenotype is an ethnic marker, that is, a Mori gene. As a key informant in one of the Mori workshops explained, they had reframed their views of race and genetics on the basis of learning basic knowledge on genetics and admixture.Genetics is not race based; it s familial. Mori are an admixed population\u2026How do you know that that s our Mori genes? How come it s not our Scottish genes? (Mori key informant, workshop).Because if you look at the Human Genome Project, for instance, we re from the family of Maui apparently\u2026It s pretty much all Polynesian, brown people\u2026but it just seems so racialised\u2026They never find bad genes in the white population. It s always in the Mori group (Mori key informant, workshop).Key informants also described how genetic analyses rarely recognised the broader social context and distracted attention from social determinants of health, including the impact of colonisation and poverty.The truth is we didn t have diabetes before we had a western diet, so how can that be genetically right? Pakeha get diabetes and they get gout so we use prevalence and incidence rates to again racialise an illness which really is an illness of poverty\u2026In genetics they never discuss poverty (Mori key informant, workshop).Control over samples and dataKey informants described the importance of Mori involvement in decisions over access, storage and use of tissue and data. They could see the potential for Mori participation in genomic research shifting from being a subject of research and a provider of tissue towards greater participation in the research design and governance. Control over tissue and data ensures that it is used for research that directly benefits the community and in a manner that recognises its cultural significance. They spoke about the need for Mori to have more influence over the use of data and the direction of research.Stewardship requires access to research and data to support developments within our communities. Engagement with research is a key activity related to accessing quality data in support of our aspirations for sovereignty (Key informant interview).Some groups are exercising sovereignty by being involved in decisions on genetic research and biobanking (Key informant interview).Increasing Mori participation in regulatory roles and strengthening Mori governance was potential mechanisms to improve the level of monitoring for researchers and biobanks in possession of Mori tissue. Possession of tissue was viewed as carrying strong implications in terms of stewardship and care. Key informants stated that it is important to be involved in the development of policies for these groups.I think it comes back to accountability because whoever owns the keys to the freezer typically determines what happens to the samples, and if the person who had the keys to the freezer is not keeping [researchers] accountable to what was agreed on in the first place then really they can do whatever they want (Mori key informant, workshop).With the biobank\u2026you almost need\u2026like a Mori with veto powers on a committee that evaluates [the research] and says, \u201cLook if you don t use the tissue for the purpose you signed up for in the beginning then nothing gets published because you\u2026had the ability to be able to say I don t want this published\u201d. But I mean an Iwi group won t have the same [power] (Mori key informant, workshop).Benefit sharingBenefit sharing is an important element of the research relationship. Key informants recognised that benefits would not always be direct health improvements but thought there was scope to explore other possibilities through education, capacity building and intellectual property. Ownership of material and data was discussed as an issue related to potential development of commercial products. Key informants stated that both researchers and participants can realise benefits from a project and a balance needs to be found to ensure communities receive an equitable share of the benefits produced through genomic research.So we need to think about it in the broader context, and then there s the ethics and the quality of the research, partnerships...and negotiation of benefits (International Advisory Panel).Expectations of consultation and engagementA desire to protect Mori/Indigenous rights and interests through the entire process of research informs their expectations of consultation. Key informants discussed the place of community engagement in the development of projects and the need for researchers to talk to the right individuals within communities. Appropriate consultation will provide an opportunity to negotiate issues of research design, sampling strategies, language, cultural support, research governance, review processes and publication protocols. Overall the use of appropriate research design was seen as a significant factor in the protection of Mori and Indigenous interests. Key informants spoke about Mori values informing the parameters around which tissue can be used. Health research has a number of best practice models which emphasise the importance of early discussions with Iwi/Mori, which is especially relevant for this context given the complex nature of the studies and the ethical issues associated with it.This is where having a conversation with Iwi becomes really important\u2026We have groups that\u2026don t necessarily know what it is they are saying yes to (Mori key informant, workshop).Expectations of consentKey informants suggested that community consent was required to gain support for the genomic project taking place. Mori communities needed access to someone who could translate genomic research jargon into practical terms for consideration. The translator would have the ability to explain what the research is likely to provide to the community, what will not be provided and any risks associated with participation. Access to independent resources and guidelines would create a more transparent and safer process for communities.You need somebody on your own team, Iwi need someone for themselves that actually can broker with the geneticists\u2026you actually need someone who can talk the geneticist s language that actually understands what methods should be used (Mori key informant, workshop).If you want to explore that uniqueness of a certain collective then you actually have to have that collectives consent, that way you can go forward...The academic freedom is seen as the sort of guiding principle by the researcher, like I don t need to be told by some community how to do my science (Non-Mori key informant, interview).Key informants felt that individual consent provides a mechanism to both allow participation while also restricting certain activities that participants might not be comfortable with like sending tissue overseas and consent for future use. It is important to consider the timing of consent and allowing individuals time to discuss risks and benefits with family and friends. The recruitment process is a key part of the gaining informed consent. Mori involved in the direct recruitment of participants often felt their connection to those communities may have influenced peoples decision to participate more than the information provided. This can create a tension for the Mori recruiter who becomes responsible for the tissue, in the eyes of the community, even if they have no decision-making power within the project team.Once again, who was the person who was getting the consent? It was actually Mori to Mori. You re sitting there, you re talking about it [genetic research project], we re selling it and they re buying in (Mori key informant, science workshop).To me the biggest lesson I ve learnt is that we shouldn t say anything. We should put them in front of our people and if our people don t like them they say no and then that s how it is (Mori key informant, science workshop).Ongoing communication and feedbackKey informants explained how a lack of knowledge is seen as a key factor in creating barriers for both researchers and Mori participants. Key informants in the science workshops perceived that Mori reluctance to participate in genomic research is due to not knowing how genomic research works and that this can also lead to suspicion and misunderstanding. They also spoke about having a lack of knowledge on how to engage with Mori to ensure that effective consultation and negotiation is part of the process of research and biobanking. In contrast, key informants in the Mori workshops expressed frustration with the lack of feedback and information about the progress and outcomes of research projects and stated that this reinforced negative sentiments about researcher commitment to their communities.Increasing the level of genetic literacy was identified as important in the context of having communities make more informed decisions about participation in genomic research. Education initiatives to increase awareness were seen as vital for both Mori and science communities. Increasing levels of cultural literacy within science communities should lead to a greater acknowledgement and respect for Mori views within the research project, enabling researchers to develop research questions that align with community health priorities, and implementation of research processes that support opportunities for Mori development.[Guidance for scientists is important] to increase the comfort level of Indigenous people who are participants in biobanking and genomic research (Mori key informant interview, workshop).DiscussionThere are a small number of established biobanks in New Zealand that manage tissue for research purposes including genomic research but a much larger number of informal biobanks , research-based tissue collections, which have samples that have been consented for future use. As there is no register for biobanks or research-based tissue collections there is no way of knowing how many samples are in storage or how many of them have been provided by Mori participants. Few projects have specifically collected samples from Mori populations for genomic research, in part due to the challenge of ensuring Mori support. Notable exceptions include the Gout and Related Conditions Project in Ngti Porou, the Rakaipaaka Health and Ancestry Study and Te Wai o Rona based in the Waikato. While Mori views on genetic research and biotechnologies indicate an increasing willingness to engage if there is a health benefit for the family or community,11,18,66 it was evident in the workshops that communities are also becoming more critical about the nature of participation and expectations of researchers.Mori communities are often uneasy about participating in genomic research, based on past experiences where projects have operated outside the ethical boundaries agreed with communities. Projects led by Arizona State University and Institute of Environmental Science and Research did not end well for Indigenous communities and highlight the potential risks associated with engagement in genomic research. Researchers at Arizona State University (ASU) gathered blood samples from Havasupai Tribe in Arizona to search for a link to diabetes, but used the samples to look for other diseases and genetic markers. Researchers at the Institute of Environmental Science and Research Ltd initiated a Health and Ancestry study with the Ngti Rakaipaaka tribe in New Zealand. The primary researcher was the protagonist of the Warrior Gene and while this incident was not directly associated with the study, it led to its demise. Indigenous and Mori researchers, and communities themselves are becoming increasingly vigilant in their expectations of research partners.The value of participationMori views on the potential benefits of biobanking, genetics and genomic research are largely related to helping others. Mori cultural concepts, in particular the concept of manaakitanga (caring, kindness), is said to increase the likelihood of Mori agreeing to participate in genetic research.14 Believing that participation will help a family member or someone else in the community who is unwell is a key motivator for Mori participation in health-related biotechnologies.11 Mori views on the value of partnership between Mori communities and genetic researchers are shown to be positive if the research is seen to be of benefit, particularly in areas such as predictive cancer testing.17While there are concerns raised over the reductionist nature of genetics, the value of genetic testing for Mori may lie in finding solutions to immediate and severe health states18 and through predictive genetic tests that identify risks of developing disease.17 However, Mori recognise that health inequalities may not be adequately explained by genetics, and one potential consequence of genetic research is that it could contribute to diminishing support for equity-based policies that recognise the role of social justice in relation to inequalities.55The challenge of effective participationThe challenges for Mori communities in participating effectively in genomic research and biobanking projects reflect the broader political dynamic relating to Indigenous-State relationships and equitable access to resources, including research. It traverses the interface between mtauranga Mori and science, and touches on the difference between the value associated with biological tissue, a taonga (treasure) in a cultural context and a biological resource in the science community. It is informed by a diverse range of Mori discourses, experiences and worldviews, and as there are numerous opportunities for misinterpretation and misunderstanding, an authentic engagement should be underpinned by clear processes and values.57It is apparent that one of the effects of colonisation is a general marginalisation of Mori communities within the realms of education, limiting Mori capacity and capability to engage in research. This is especially true for the increasingly technical research projects conducted in scientific disciplines. The Mori key informants indicated that there was a general lack of understanding about genomic research and biobanking in their communities and also identified that there were limited opportunities for involvement in the research process. Becoming informed is a significant challenge for both communities engaging with researchers and individuals considering participation in projects. The information imbalance reflects the power imbalance that exists between researchers and com

Summary

Abstract

The aim of the Te Mata Ira project was to explore Mori views on biobanking and genomic research, and to identify ways to address Mori concerns over the collection and use of human tissue. Key informant interviews and workshops were conducted with Mori to identify Mori views in relation to biobanking and genomic research; and, informed by these views, interviews and workshops were conducted with Mori and non-Mori key informants (Indigenous Advisory Panel (IAP) members and science communities) to explore key issues in relation to Mori participation in biobanking and genomic research. Mori key informants identified the following as key deliberations: (1) the tension for Mori between previous well-publicised negative experiences with genomic research and the potential value for whnau and communities as technologies develop, (2) protection of Mori rights and interest, (3) focus on Mori health priorities, (4) control of samples and data, (5) expectations of consultation and consent and (6) a desire for greater feedback and communication. Mori and non-Mori key informants highlighted the need to enhance levels of Mori participation in the governance of genomic research and biobanking initiatives, and acknowledged that only by increasing the level of transparency and accountability in relation to these activities will Mori communities feel that their whakapapa, rights and interests are being appropriately protected.

Aim

Method

Results

Conclusion

Author Information

Maui Hudson, Mori and Indigenous Governance Centre, University of Waikato, Hamilton; Kim Southey, Independent Researcher, Hamilton; Lynley Uerata, Independent Researcher, Hamilton; Angela Beaton, Health and Social Practice, Waikato Institute of Technology, Hamilton; Moe Milne, Independent Researcher, Northland; Khyla Russell, Otago Polytechnic, Waikouaiti; Barry Smith, Planning and Funding, Lakes DHB, Rotorua; Phillip Wilcox, Department of Statistics, University of Otago, Dunedin; Valmaine Toki, Faculty of Law, University of Waikato, Hamilton; Melanie Cheung, Centre for Brain Research, University of Auckland, Auckland, Waiora Port, Independent Researcher, Hamilton.

Acknowledgements

The Te Mata Ira research team would like to extend our sincere thanks and gratitude to the participants who generously contributed the project. Thank you to the Health Research Council of New Zealand who funded the research project (HRC 12/470). Ng mihi ki a koutou katoa.

Correspondence

Maui Hudson, Mori and Indigenous Governance Centre, University of Waikato, Hamilton.

Correspondence Email

maui@waikato.ac.nz

Competing Interests

Kim Southey, Moe Milne, Waiora Port, Maui Hudson and Lynley Uerata report grants from Health Research Council of New Zealand during the conduct of the study. Phillip Wilcox reports grants from the Ministry of Health during the conduct of the study.

-- Cram F. Rangahau Mori: T\u014dna tika, t\u014dna pono. In: Tolich M, editor. Research ethics in Aotearoa. Auckland, New Zealand: Longman; 2001. p. 35-52. Hudson M, Milne M, Reynolds P, Russell K, Smith B. Te Ara Tika - Guidelines for Mori res

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Mori have been contributing to the debates about research ethics1-3 and genetics4-8 for a number of years. Several studies exploring Mori views on genetic research9-13 and biobanking14,15 have described Mori perspectives on these types of research and the key issues that arise, including cultural issues,16,17 governance issues,18,19 consent processes,20 social equipoise,21,22 distribution of risks and benefits,2,23 tissue storage,16,24 analysis10,23 and interpretation of results.10,20,23Te Ara Tika Guidelines on Mori Research Ethics: A framework for researchers and ethics committee members2 established a framework for understanding the diverse views that inform Mori ethical deliberations and noted the heightened ethical sensitivities that exist for Mori in relation to the use of tissue and genetic information. However, the document did not provide substantive comment or practical advice for genetic researchers or biobanks in relation to Mori cultural, ethical and legal parameters for these activities. Mori continue to consent for their tissue to be used in biomedical research projects,4,10,11,13 so it is important that their expectations of ethical research behaviour are reflected in developing guidelines. The Te Mata Ira research project explored the issues that Mori encounter when they choose to be involved in genomic research and biobanking with the aim of providing more substantive culturally appropriate guidance to researchers and communities alike.BackgroundGenomic research represents a new frontier for health research and provides a platform for personalised medicines (pharmacogenomics). The scale of biological samples required to adequately power genomic studies has led to significant growth, nationally and internationally, of both biobanks and genomic databases.25-29 Though genomic research has yet to fulfil the promise of personalised medicine, ethical discussions within Mori communities4,9,11,30 and among ethicists in the international domain31-34 are evolving to meet emerging challenges and technologies. Subsequently, there has been a proliferation of international genetic databases25,35 and national34,36 and international guidance documents37-39 suggesting various ways for governing them. Yet commercialisation practices and the return of individual results varies.14,28 Nevertheless, it is vital to include Indigenous ethical principles in genomic research, particularly given the existing storage of Indigenous genetic material and because it is possible that genomics could play a role in future contests over Indigenous people s claims of identity and rights.40-42Ethical controversies surrounding genetic studies, like the human genome diversity project, 23 the warrior gene 43,44 and the Arizona State University settlement with the Havusupai, a Native American tribe,45 have prompted Indigenous critiques. These have included research by Indigenous Peoples Council on biocolonialism about the Havasupai15,46-48 and work undertaken by the National Congress of American Indians (NCAI) studying views of genetic health research in Indian Country.15,49-51 Researchers are also recognising the need for change, and a recent Nature Reviews Genetics paper by Gottweis, Chen52 called for biobanks to address issues of trust, benefit sharing, data security, privacy and practicing reciprocity.The use of biobanks and sharing of research data across projects are also being discussed in New Zealand as a cost-saving measure, particularly in relation to a number of high-cost medicines associated with cancer treatment. In the past two years the Health Research Council of New Zealand (HRC) Ethics Committee was approached for guidance on both secondary and unspecified future use of data and human tissue as well as appropriate use of information databases, prompting the HRC to consider developing a data-sharing policy. Recent research by New Zealand s Virtual Institute of Statistical Genetics has also shown that sample sizes of 1,000,000 10,000,000 are needed to obtain sufficient evidence for association, meaning extensive data sharing, including that relating to Mori genetic material, is required for genome-wide association studies.26 In many instances the data being shared will be based on biological samples (genetic/genomic information) and pressure is increasing for anonymous datasets be placed in the public domain as a prerequisite for publication. Similarly, the linking of computerised medical records with genetic/genomic information and population-level genome sequencing is also on the horizon.The speed of technological advance is outpacing the development of ethical oversight and it is apparent that in New Zealand much of the guidance on genetic research and data sharing is not specific enough to deal with emerging ethical issues associated with the types of genomic research now possible. The recent establishment of the Auckland Regional Tissue Bank (Auckland), Rare Diseases Tissue Bank (Dunedin), Melanoma Tissue Bank (Dunedin) and the Centre for Brain Research Biobank (Auckland) illustrate a shift towards developing more formal tissue storage facilities and the provision of more transparent consent processes for the ongoing use of tissue in research including genetic and genomic studies.MethodsThree sets of participants contributed views to gain understanding about the genomic research and biobanking contexts, how Indigenous populations have fared in these contexts and strategies to regulate these contexts. Semi-structured interviews were held with seven Te Mata Ira International Advisory Panel (IAP) members until saturation was achieved. The panel members, who belong to Indigenous communities in Australia, Hawaii, Canada, US and New Zealand, represent a diverse range of research expertise in Indigenous health, health policy, medical genomics and bioinformatics. Given their diverse locations, IAP members were interviewed by telephone or skype. Five stakeholder workshops were conducted at Auckland, Christchurch and Dunedin (n=5). Two were science focussed workshops aimed at genetic researchers and biobank personnel (n=27, both Mori and non-Mori), and three were Mori focussed workshops to gain views from Mori who have a role in health research, ethics or genetics (n=31).The three key questions asked in the interviews and workshops were; Why should Mori/Indigenous communities participate in biobanking and/or genomic research? What are the key issues for Mori/Indigenous participation in biobanking and genomic research? How might we address these issues? The interviews and workshops were digitally audio-recorded, transcribed and summarised. Summaries were checked with IAP members to enhance validity. A guided thematic analysis the process of coding empirical material to the research questions and emerging themes53,54 was conducted across several key domains, including but not limited to potential benefits of participation, barriers to participation and expectations of behaviour. Answers to the first and second questions are detailed below. Because key informants answered question three while discussing issues prompted by question two, these findings are presented together.FindingsWhy should Mori participate in biobanking and genomic research?The question of whether it is useful or appropriate for Indigenous/Mori communities to engage with new technologies continues to be the subject of discussion and debate. The views advanced by the three groups of participants reflect a wide range of opinions on the value of participation in genomic research and biobanking initiatives. The key opportunities outlined by participants provided by engaging in genomic research and biobanking are the potential; to derive health outcomes to increase understanding and trust in the science and scientists to improve processes of research to protect broader interests of the Mori community to realise other opportunities Potential health outcomes were described largely in relation to lessening the incidence and prevalence of disease, along with recognising that genomic medicine may be another type of health care that Mori communities can benefit from. Mori key informants considered the value of participation in two distinct ways, namely, individual value and community value. At an individual level, key informants spoke about the potential to enhance health outcomes for the individual seeking treatment and expressed a keen sense of altruism in wanting to be part of something that they believed may help others outside of their immediate family. Mori participation in genomic research was also described by some as a potential tool for reducing inequalities but only if it is applied at both the individual and the community levels in an appropriate manner, along with a clear understanding of the limitations of genomic research. The optimism about potential health gains was balanced by a recognition that genetic contributions towards health outcomes are only part of the answer and will be situated within a broader context of social determinants.What is the ethical balance between doing genetic research and what we know about the impacts of inequalities and poverty? (Mori key informant, workshop)The perceived link between enhanced treatment for disease and participation in genomic research was particularly pronounced in the discussion within the science workshops. Key informants in the science workshops explained that the current limited evidence on genetic variation between Mori tissue and other populations provides a unique opportunity and motivation for scientists to work with these communities in biomarker discovery. Mori participation is also seen as necessary to provide representative population wide data, something necessary to ensure that Mori communities directly benefit from genomic medicine in the future. Along with other limitations, Mori would only benefit if there were sufficient numbers of Mori participants and statistical power for Mori specific analyses to be conducted. Key informants in the science workshops also suggested increasing Mori samples in biobanks would provide greater opportunities for Mori specific health priorities to be researched. They noted that Mori participation in genomic research and biobanking projects would require a greater level of trust in the people and processes responsible for the storage and use of tissue samples, as well as a greater level of transparency and culturally appropriate engagement from scientists.Participation as a potential opportunity and facilitator of other community development and capacity building initiatives was also discussed. The benefits described included those arising through greater control such as ownership of intellectual as well as biological property, and were described in a way that strategically positions Indigenous communities as decision-makers including supporting aspirations for sovereignty.Key informants also felt that it is important to consider the factors that motivate whnau to get involved in genetic research and how this impacts on their ability to ask critical questions about the nature of the project. Families with genetic concerns participate in the interest of their family s health as their primary focus is coping with the condition not how their genetic data might be used in the future.If I ve got it then I want my kids to be protected [from the disease] so it was a real whakapapa thing. It wasn t a raced based, community based, [or] Iwi based thing at all. They did it [genetic testing] because they thought, \u201cIf I have something genetically wrong and my kid inherits it\u2026then I want my kid to know that and for that to drive practice\u201d (Mori key informant, workshop).Generally, the key informants that participated in the science workshops were more positive about the value of Mori participation in biobanking and genomic research in terms of improving the science and ensuring outcomes from research benefit Mori. The Indigenous Advisory Panel and the key informants at the Mori workshops were more reticent about the value of participation but recognised it has direct benefit for specific individuals and families, and that other collective interests could be addressed if Mori were more involved in governance and decision making to ensure the wider health benefits are realised.What are the key issues related to Mori participation in biobanking and genomic research?Protection of Mori rights and interestsKey informants described a legacy of mistrust created by examples of unethical engagement with Indigenous peoples in biomedical research, and this motivates Mori to evaluate genomic research projects with a greater degree of scrutiny. Mori research principles promoting community participation, culturally appropriate protocols and Mori involvement in research and governance provide the foundation for sound partnerships and quality research. Key informants spoke about the need to protect Mori interests through Mori control promoting concepts of power-sharing over benefit-sharing.We ll get this right if we know that the control sits with Mori. Not individual Mori because actually that s a personal decision that they re making based on a personal perspective\u2026But this stuff has to occur on a much bigger scale and it has to be able to shift this down [to the level of Mori community] otherwise it s of no value (Mori workshop).Focus on Mori and Indigenous health prioritiesKey informants questioned whether genomic research is what is needed to change negative health outcomes for Mori. Key informants recognised the usefulness of genetic information for some conditions; however, they were less convinced of its utility for key Mori health priorities like diabetes or cardiovascular disease where multiple genes and environmental factors contribute to its expression. If health status is considered within a determinants of health framework then there are other places you would put resources to address environmental and systemic factors impacting on individuals and populations. Key informants in the Mori workshops generally thought that prioritising funding for genomic research would divert resources away from public health research, which they believe had more immediate benefits for Mori communities.They ve got this information that they might have this gene contributing to whatever disease but then what do they do with that information? How can they use that to improve health? (Key informant interview).We are at the intervention stage in public health. So when you re putting resources into this unknown area when we ve got all this mahi that we should be doing [it is mismatched] (Key informant, Mori workshop).Robustness of genetic research methodsA number of the key informants had high levels of research expertise and were able to critique the framing and methods used in specific genomic research projects. Some of the concerns expressed include;a) the construction of racial or ethnic groupings for genetic comparisons,b) the attribution of familial characteristics to larger groupings,c) the analysis and interpretation of results andd) an interest in the scientific novelty rather than clinical application.Inappropriate interpretation of results, as occurred with the Warrior Gene hypothesis where polymorphisms in the monoamine oxidase A gene, were linked to aggressive behaviour in Mori, stigmatised the Mori community and reinforced negative stereotypes of researchers.20,55 One of the key challenges for genomic researchers when communicating results of genetic studies in specific ethnic populations is to ensure people understand that the use of the group to help identify a functional genes or phenotype does not mean that the phenotype is an ethnic marker, that is, a Mori gene. As a key informant in one of the Mori workshops explained, they had reframed their views of race and genetics on the basis of learning basic knowledge on genetics and admixture.Genetics is not race based; it s familial. Mori are an admixed population\u2026How do you know that that s our Mori genes? How come it s not our Scottish genes? (Mori key informant, workshop).Because if you look at the Human Genome Project, for instance, we re from the family of Maui apparently\u2026It s pretty much all Polynesian, brown people\u2026but it just seems so racialised\u2026They never find bad genes in the white population. It s always in the Mori group (Mori key informant, workshop).Key informants also described how genetic analyses rarely recognised the broader social context and distracted attention from social determinants of health, including the impact of colonisation and poverty.The truth is we didn t have diabetes before we had a western diet, so how can that be genetically right? Pakeha get diabetes and they get gout so we use prevalence and incidence rates to again racialise an illness which really is an illness of poverty\u2026In genetics they never discuss poverty (Mori key informant, workshop).Control over samples and dataKey informants described the importance of Mori involvement in decisions over access, storage and use of tissue and data. They could see the potential for Mori participation in genomic research shifting from being a subject of research and a provider of tissue towards greater participation in the research design and governance. Control over tissue and data ensures that it is used for research that directly benefits the community and in a manner that recognises its cultural significance. They spoke about the need for Mori to have more influence over the use of data and the direction of research.Stewardship requires access to research and data to support developments within our communities. Engagement with research is a key activity related to accessing quality data in support of our aspirations for sovereignty (Key informant interview).Some groups are exercising sovereignty by being involved in decisions on genetic research and biobanking (Key informant interview).Increasing Mori participation in regulatory roles and strengthening Mori governance was potential mechanisms to improve the level of monitoring for researchers and biobanks in possession of Mori tissue. Possession of tissue was viewed as carrying strong implications in terms of stewardship and care. Key informants stated that it is important to be involved in the development of policies for these groups.I think it comes back to accountability because whoever owns the keys to the freezer typically determines what happens to the samples, and if the person who had the keys to the freezer is not keeping [researchers] accountable to what was agreed on in the first place then really they can do whatever they want (Mori key informant, workshop).With the biobank\u2026you almost need\u2026like a Mori with veto powers on a committee that evaluates [the research] and says, \u201cLook if you don t use the tissue for the purpose you signed up for in the beginning then nothing gets published because you\u2026had the ability to be able to say I don t want this published\u201d. But I mean an Iwi group won t have the same [power] (Mori key informant, workshop).Benefit sharingBenefit sharing is an important element of the research relationship. Key informants recognised that benefits would not always be direct health improvements but thought there was scope to explore other possibilities through education, capacity building and intellectual property. Ownership of material and data was discussed as an issue related to potential development of commercial products. Key informants stated that both researchers and participants can realise benefits from a project and a balance needs to be found to ensure communities receive an equitable share of the benefits produced through genomic research.So we need to think about it in the broader context, and then there s the ethics and the quality of the research, partnerships...and negotiation of benefits (International Advisory Panel).Expectations of consultation and engagementA desire to protect Mori/Indigenous rights and interests through the entire process of research informs their expectations of consultation. Key informants discussed the place of community engagement in the development of projects and the need for researchers to talk to the right individuals within communities. Appropriate consultation will provide an opportunity to negotiate issues of research design, sampling strategies, language, cultural support, research governance, review processes and publication protocols. Overall the use of appropriate research design was seen as a significant factor in the protection of Mori and Indigenous interests. Key informants spoke about Mori values informing the parameters around which tissue can be used. Health research has a number of best practice models which emphasise the importance of early discussions with Iwi/Mori, which is especially relevant for this context given the complex nature of the studies and the ethical issues associated with it.This is where having a conversation with Iwi becomes really important\u2026We have groups that\u2026don t necessarily know what it is they are saying yes to (Mori key informant, workshop).Expectations of consentKey informants suggested that community consent was required to gain support for the genomic project taking place. Mori communities needed access to someone who could translate genomic research jargon into practical terms for consideration. The translator would have the ability to explain what the research is likely to provide to the community, what will not be provided and any risks associated with participation. Access to independent resources and guidelines would create a more transparent and safer process for communities.You need somebody on your own team, Iwi need someone for themselves that actually can broker with the geneticists\u2026you actually need someone who can talk the geneticist s language that actually understands what methods should be used (Mori key informant, workshop).If you want to explore that uniqueness of a certain collective then you actually have to have that collectives consent, that way you can go forward...The academic freedom is seen as the sort of guiding principle by the researcher, like I don t need to be told by some community how to do my science (Non-Mori key informant, interview).Key informants felt that individual consent provides a mechanism to both allow participation while also restricting certain activities that participants might not be comfortable with like sending tissue overseas and consent for future use. It is important to consider the timing of consent and allowing individuals time to discuss risks and benefits with family and friends. The recruitment process is a key part of the gaining informed consent. Mori involved in the direct recruitment of participants often felt their connection to those communities may have influenced peoples decision to participate more than the information provided. This can create a tension for the Mori recruiter who becomes responsible for the tissue, in the eyes of the community, even if they have no decision-making power within the project team.Once again, who was the person who was getting the consent? It was actually Mori to Mori. You re sitting there, you re talking about it [genetic research project], we re selling it and they re buying in (Mori key informant, science workshop).To me the biggest lesson I ve learnt is that we shouldn t say anything. We should put them in front of our people and if our people don t like them they say no and then that s how it is (Mori key informant, science workshop).Ongoing communication and feedbackKey informants explained how a lack of knowledge is seen as a key factor in creating barriers for both researchers and Mori participants. Key informants in the science workshops perceived that Mori reluctance to participate in genomic research is due to not knowing how genomic research works and that this can also lead to suspicion and misunderstanding. They also spoke about having a lack of knowledge on how to engage with Mori to ensure that effective consultation and negotiation is part of the process of research and biobanking. In contrast, key informants in the Mori workshops expressed frustration with the lack of feedback and information about the progress and outcomes of research projects and stated that this reinforced negative sentiments about researcher commitment to their communities.Increasing the level of genetic literacy was identified as important in the context of having communities make more informed decisions about participation in genomic research. Education initiatives to increase awareness were seen as vital for both Mori and science communities. Increasing levels of cultural literacy within science communities should lead to a greater acknowledgement and respect for Mori views within the research project, enabling researchers to develop research questions that align with community health priorities, and implementation of research processes that support opportunities for Mori development.[Guidance for scientists is important] to increase the comfort level of Indigenous people who are participants in biobanking and genomic research (Mori key informant interview, workshop).DiscussionThere are a small number of established biobanks in New Zealand that manage tissue for research purposes including genomic research but a much larger number of informal biobanks , research-based tissue collections, which have samples that have been consented for future use. As there is no register for biobanks or research-based tissue collections there is no way of knowing how many samples are in storage or how many of them have been provided by Mori participants. Few projects have specifically collected samples from Mori populations for genomic research, in part due to the challenge of ensuring Mori support. Notable exceptions include the Gout and Related Conditions Project in Ngti Porou, the Rakaipaaka Health and Ancestry Study and Te Wai o Rona based in the Waikato. While Mori views on genetic research and biotechnologies indicate an increasing willingness to engage if there is a health benefit for the family or community,11,18,66 it was evident in the workshops that communities are also becoming more critical about the nature of participation and expectations of researchers.Mori communities are often uneasy about participating in genomic research, based on past experiences where projects have operated outside the ethical boundaries agreed with communities. Projects led by Arizona State University and Institute of Environmental Science and Research did not end well for Indigenous communities and highlight the potential risks associated with engagement in genomic research. Researchers at Arizona State University (ASU) gathered blood samples from Havasupai Tribe in Arizona to search for a link to diabetes, but used the samples to look for other diseases and genetic markers. Researchers at the Institute of Environmental Science and Research Ltd initiated a Health and Ancestry study with the Ngti Rakaipaaka tribe in New Zealand. The primary researcher was the protagonist of the Warrior Gene and while this incident was not directly associated with the study, it led to its demise. Indigenous and Mori researchers, and communities themselves are becoming increasingly vigilant in their expectations of research partners.The value of participationMori views on the potential benefits of biobanking, genetics and genomic research are largely related to helping others. Mori cultural concepts, in particular the concept of manaakitanga (caring, kindness), is said to increase the likelihood of Mori agreeing to participate in genetic research.14 Believing that participation will help a family member or someone else in the community who is unwell is a key motivator for Mori participation in health-related biotechnologies.11 Mori views on the value of partnership between Mori communities and genetic researchers are shown to be positive if the research is seen to be of benefit, particularly in areas such as predictive cancer testing.17While there are concerns raised over the reductionist nature of genetics, the value of genetic testing for Mori may lie in finding solutions to immediate and severe health states18 and through predictive genetic tests that identify risks of developing disease.17 However, Mori recognise that health inequalities may not be adequately explained by genetics, and one potential consequence of genetic research is that it could contribute to diminishing support for equity-based policies that recognise the role of social justice in relation to inequalities.55The challenge of effective participationThe challenges for Mori communities in participating effectively in genomic research and biobanking projects reflect the broader political dynamic relating to Indigenous-State relationships and equitable access to resources, including research. It traverses the interface between mtauranga Mori and science, and touches on the difference between the value associated with biological tissue, a taonga (treasure) in a cultural context and a biological resource in the science community. It is informed by a diverse range of Mori discourses, experiences and worldviews, and as there are numerous opportunities for misinterpretation and misunderstanding, an authentic engagement should be underpinned by clear processes and values.57It is apparent that one of the effects of colonisation is a general marginalisation of Mori communities within the realms of education, limiting Mori capacity and capability to engage in research. This is especially true for the increasingly technical research projects conducted in scientific disciplines. The Mori key informants indicated that there was a general lack of understanding about genomic research and biobanking in their communities and also identified that there were limited opportunities for involvement in the research process. Becoming informed is a significant challenge for both communities engaging with researchers and individuals considering participation in projects. The information imbalance reflects the power imbalance that exists between researchers and com

Summary

Abstract

The aim of the Te Mata Ira project was to explore Mori views on biobanking and genomic research, and to identify ways to address Mori concerns over the collection and use of human tissue. Key informant interviews and workshops were conducted with Mori to identify Mori views in relation to biobanking and genomic research; and, informed by these views, interviews and workshops were conducted with Mori and non-Mori key informants (Indigenous Advisory Panel (IAP) members and science communities) to explore key issues in relation to Mori participation in biobanking and genomic research. Mori key informants identified the following as key deliberations: (1) the tension for Mori between previous well-publicised negative experiences with genomic research and the potential value for whnau and communities as technologies develop, (2) protection of Mori rights and interest, (3) focus on Mori health priorities, (4) control of samples and data, (5) expectations of consultation and consent and (6) a desire for greater feedback and communication. Mori and non-Mori key informants highlighted the need to enhance levels of Mori participation in the governance of genomic research and biobanking initiatives, and acknowledged that only by increasing the level of transparency and accountability in relation to these activities will Mori communities feel that their whakapapa, rights and interests are being appropriately protected.

Aim

Method

Results

Conclusion

Author Information

Maui Hudson, Mori and Indigenous Governance Centre, University of Waikato, Hamilton; Kim Southey, Independent Researcher, Hamilton; Lynley Uerata, Independent Researcher, Hamilton; Angela Beaton, Health and Social Practice, Waikato Institute of Technology, Hamilton; Moe Milne, Independent Researcher, Northland; Khyla Russell, Otago Polytechnic, Waikouaiti; Barry Smith, Planning and Funding, Lakes DHB, Rotorua; Phillip Wilcox, Department of Statistics, University of Otago, Dunedin; Valmaine Toki, Faculty of Law, University of Waikato, Hamilton; Melanie Cheung, Centre for Brain Research, University of Auckland, Auckland, Waiora Port, Independent Researcher, Hamilton.

Acknowledgements

The Te Mata Ira research team would like to extend our sincere thanks and gratitude to the participants who generously contributed the project. Thank you to the Health Research Council of New Zealand who funded the research project (HRC 12/470). Ng mihi ki a koutou katoa.

Correspondence

Maui Hudson, Mori and Indigenous Governance Centre, University of Waikato, Hamilton.

Correspondence Email

maui@waikato.ac.nz

Competing Interests

Kim Southey, Moe Milne, Waiora Port, Maui Hudson and Lynley Uerata report grants from Health Research Council of New Zealand during the conduct of the study. Phillip Wilcox reports grants from the Ministry of Health during the conduct of the study.

-- Cram F. Rangahau Mori: T\u014dna tika, t\u014dna pono. In: Tolich M, editor. Research ethics in Aotearoa. Auckland, New Zealand: Longman; 2001. p. 35-52. Hudson M, Milne M, Reynolds P, Russell K, Smith B. Te Ara Tika - Guidelines for Mori res

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