Changing genes: Science and being Maori

This commentary follows tangential lines of reason stimulated by Hook‟s thought- provoking paper, “Warrior genes” and the disease of being Māori (2009), to question the ethical responsibilities of scientists to the public in modern society

He matatika Maori: Maori and ethical review in health research

Maori aspirations for a better future are inextricably linked to their health and well-being. Research is a central element of any strategy to ensure that the inequalities of today will not be experienced by Maori children of the future. Kaupapa Maori research has been at the forefront of the indigenous challenge to Western research practices which continue to frame Maori as the 'other' and victim blame by measuring differences to non-Maori and then attribute identified negative differences to Maori deficit. A kaupapa Maori framework validates Maori realities and enables the development of research processes that are based on a Maori worldview and endorse Maori values and beliefs. Proponents of distinctly Maori research methodologies have questioned the appropriateness of ethical review processes that are based on Western concepts of ethics that they contend are incongruent with Maori cultural values and beliefs. Maori ethical issues identified in the literature that arise from this interface have similarities with indigenous ethical themes of respect, control and reciprocity. This qualitative research study was based on a kaupapa Maori approach. The research addressed two main research questions: whether the current system of ethical review in New Zealand is responsive to Maori and how can tikanga Maior inform Maori research ethics. Primary data for this study was drawn from interviews with Maori members of ethics committees and analysed thematically. The major conclusion of this study was that the current ethical review process is limited in its responsiveness to Maori. The research found that Maori values were generally marginalised within ethical review processes that are based on universal ethics derived from a Western value base. A number of key ethical issues for Maori are not addressed appropriately within the current system of ethical review due to the limited parameters, in Maori terms, of the review process. It is essential that Maori issues and concerns be addressed in order for Maori to benefit from the activities of the research sector. Differences exist between Maori and Western concepts of ethics and the inclusion of tikanga Maori within the ethical review process could lead to a more transparent and responsive evaluation and greatly enhance the quality of ethical review of health research in New Zealand. The development of a Maori ethical framework that describes the principles of tikanga Maori and their application within the context of research ethics could provide a culturally appropriate framework for ethical review. Such a framework would address ethical issues of significance for Maori in research. The establishment of a National Maori Ethics Committee and the development of a parallel Maori ethical review pathway would further enhance Maori responsiveness

Te Mata Ira: Guidelines for Genomic Research with Māori.: Te Mata Ira: Guidelines for Genomic Research with Māori.

Māori ethical frameworks recognise that all research in New Zealand is of interest to Māori and outline community expectations of appropriate behavior in research to deliver the best outcomes for Māori. Research contributes to the broader development objectives of society. Ethics has a specific role in guiding key behaviours, processes and methodologies used in research. This document outlines a framework for addressing Māori ethical issues within the context of genetic or genomic research. It draws on a foundation of mātauranga (Māori knowledge) and tikanga Māori (Māori protocols and practices) and will be useful for researchers, ethics committee members and those who engage in consultation or advice about genomic research with Māori in local, regional, national or international settings

Ngā Tohu o te Ora: traditional Māori healing and wellness outcomes

The Ngā Tohu o te Ora (signs of wellness) research project was developed to investigate outcomes associated with rongoā Māori, in order that this traditional practice might enjoy increased support as a funded service. The primary aims were to: 1. Identify wellness outcome measures used by traditional Māori healers, and 2. Develop and test a framework of traditional Māori wellness outcome measures. Secondary aims included integrating the wellness outcomes framework with the Pūrākau framework (developed by the authors in a previous HRC seeding grant), and disseminating research findings among healing, health service delivery and research communities. 10 Work towards Aims 1 and 2 were undertaken in two distinct stages in the research: identifying wellness outcomes and weaving them together in the form of a framework comprised Stage I research activities (June 2008 - December 2009), and testing the use of the framework by Whare Oranga constituted Stage II (January 2010 - July 2011). Recognising the importance of meaningful engagement for both research 'success' and healer benefit, emphasis was placed on ensuring high quality relationships between the research team and participating practitioners/Whare Oranga throughout; this constituted an implicit process aim. Several further aims emerged from engagement with healers, within which healers and research team members discussed potential service-oriented benefits that the research project would work towards. These included: • Enhancing the capacity of Whare Oranga to provide service information to funders that might support their wider understanding of rongoā Māori, with a view to securing additional contracts; • Providing newly established or developing Whare Oranga with tools and frameworks to support and strengthen their entry into health service provision in their local communities; and • Articulating clearly defined, assessable and progressive steps toward targeted domains of wellbeing for use by practitioners and their clients

Intellectual Property, Mātauranga Māori

This literature review has been conducted to consider the various national legislation and international agreements that comprise New Zealand’s Intellectual Property Rights (IP) regime. It will evaluate if and how such legislation and agreements protect and enable Māori IP rights and interests with respect to Māori data, genomic data and mātauranga Māori. The review also identifies some mechanisms that might also enhance Māori control of these types of data. The Westminster approach of legislation in New Zealand and its approach to IP protection based on Copyrights, Patents and Trade Marks are juxtaposed against traditional Maori approaches of communally held ancestral knowledge (mātauranga) passed down through generations (whanaungatanga) based on guardianship and protection (kaitiakitanga) and the self-determination of use of such knowledge (rangatiratanga). Attempting to align tikanga concepts to the Westmionster model of law is challenging as the two share completely different notions of ownership and responsibility. Expectations of protection, to prevent misappropriation and commercialisation by non- Māori of mātauranga Māori and Māori data, extend beyond the parameters of existing IP law, creates a similar disjunct. Genomic Research generates data, some of which can be protected by IP, however researchers working with genetic/genomic data from taonga species have often failed to acknowledge the non-IP interests of Maori. As a result, Maori have taken it upon themselves to advocate for their rights to data through Māori data sovereignty discourse as well as create guidelines for culturally appropriate genomic research with explicit references to data security and management (e.g. Te Mata Ira, Te Nohonga Kaitiaki). Other extra-legal options, such as Biocultural Labelling to alert users where particular data has Māori rights and/or interests, are emerging to maintain create durable provenance data and connect next users of data with the responsible Indigenous communities. Though the intellectual property regime in New Zealand may provide some protections, there are still significant areas where the legal system does not provide sufficient protections for Māori data, taonga species and mātauranga. The UN Declaration on the Rights of Indigenous Peoples provides a framework of international support for Indigenous rights, but local government and other home-grown mechanisms are important to enable Māori governance of data. Local approaches Māori Data Sovereignty and Māori Data Governance afford Maori the opportunity to be directly involved as kaitiaki of their mātauranga and assert rangatiratanga over data and its use

Benefit sharing: Why inclusive provenance metadata matter

Fair and equitable benefit sharing of genetic resources is an expectation of the Nagoya Protocol. Although the Nagoya Protocol does not yet formally apply to Digital Sequence Information (“DSI”), discussions are currently underway regarding to include such data through ongoing Convention on Biological Diversity (“CBD”) negotiations. While Indigenous Peoples and Local Communities (“IPLC”) expect the value generated from genomic data to be subject to benefit sharing arrangements, a range of views are currently being expressed by Nation States, IPLC and other stakeholders. The use of DSI gives rise to unique considerations, creating a gray area as to how it should be considered under the Nagoya Protocol’s Access and Benefit Sharing (“ABS”) principles. One way for benefit sharing to be enhanced is through the connection of data to proper provenance information. A significant development is the use of digital labeling systems to ensure that the origin of samples is appropriately disclosed. The Traditional Knowledge and Biocultural Labels initiative offers a practical option for data provided to genomic databases. In particular, the BioCultural Labels (“BC Labels”) are a mechanism for Indigenous communities to identify and maintain provenance, origin and authority over biocultural material and data generated from Indigenous land and waters held in research, cultural institutions and data repositories. This form of cultural metadata adds value to the research endeavor and the creation of Indigenous fields within databases adds transparency and accountability to the research environment

He Pikinga Waiora: Supporting Maori health organisations to respond to pre-diabetes

Background Type 2 Diabetes (T2D) is a common long-term condition affecting the health and wellbeing of New Zealanders; one in every four New Zealanders is pre-diabetic. Māori, the Indigenous people of New Zealand, are at an increased risk of developing pre-diabetes and T2D and there are significant inequities between Māori and non-Māori for T2D complications. The purpose of this study was to explore the questions of how the strengths of Māori heath organisations may be leveraged, and how the barriers and constraints experienced by Māori health organisations may be negotiated, for the benefit of Māori; and from a systems perspective, to identify strategic opportunities that may be considered and applied by Māori health organisations, funders and policy makers to respond more effectively to pre-diabetes and reduce health inequities between Māori and non-Māori. Methods Utilising case study methodology, a range of data sources were triangulated including nine semi-structured interviews, documents, and a diabetes system map to identify possible strategic opportunities for key stakeholders to respond more effectively to pre-diabetes. Results Key themes and possible actions to improve health outcomes for Māori with pre-diabetes include: (1) Recognising Māori health organisations as conduits for the community voice and influential partners in the community to effect change; (2) Strengthened partnerships with Māori health organisations for community benefit and to support measurable, evidence-based change and service delivery, particularly when Māori knowledge systems are viewed alongside a Western scientific approach; and (3) Intersectoral integration of health and social services to support provision of whānau-centred care and influence the social determinants of health and local environment. Conclusions Māori health organisations are important actors in systems seeking to improve outcomes and eliminate health inequities. Support from funders and policy makers will be required to build on the strengths of these organisations and to overcome system challenges. To realise improved health outcomes for Māori, the value placed on whānau and community perspectives not only needs to be acknowledged in the implementation of health interventions, health and social policies and funding arrangements, but performance measures, service design and delivery must evolve to accommodate these perspectives in practice

Te Mata Ira—Faces of the Gene: Developing a cultural foundation for biobanking and genomic research involving Māori

Te Mata Ira was a three-year research project (2012–2015) that explored Māori views on genomic research and biobanking for the development of culturally appropriate guidelines. A key component of this process has been to identify Māori concepts that provide cultural reference points for engaging with biobanking and genomic research. These cultural cues provide the basis for describing the cultural logic that underpins engagement in this context in a culturally acceptable manner. This paper outlines the role of two wānanga (workshops) conducted as part of the larger project that were used to make sense of the Māori concepts that emerged from other data-collection activities. The wānanga involved six experts who worked with the research team to make sense of the Māori concepts. The wānanga process created the logic behind the cultural foundation for biobanking and genomic research, providing a basis for understanding Māori concepts, Māori ethical principles and their application to biobanking and genomic research

"He Matapihi ki te Mana Raraunga” - Conceptualising Big Data through a Māori lens

Advances in computer technology and analytical processes create an environment where data becomes the raw material mined to create valuable information and insights. The idea of Big Data emerges from the collation of increasing vast amounts of data enabled by the shift towards an increasingly open data environment. How this changing context alters the relationship between Iwi/Māori collectives and their mātauranga, cultural information and data has yet to be fully explored. However, the concept of Māori Data Sovereignty, which anticipates Māori governance over Māori data, has a natural appeal. This chapter outlines some of the Māori concepts and presents a framework which may be used to inform how data and data use may be conceptualised through a Māori cultural lens