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      Engaging Māori in Biobanking and Genetic Research: Legal, Ethical and Policy Challenges

      Beaton, Angela; Smith, Barry; Toki, Valmaine; Southey, Kim; Hudson, Maui
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      Engaging Maori in Biobanking and Genetic Research (1).pdf
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       ir.lib.uwo.ca
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      Beaton, A., Smith, B., Toki, V., Southey, K., & Hudson, M. (2015). Engaging Māori in Biobanking and Genetic Research: Legal, Ethical and Policy Challenges. The International Indigenous Policy Journal, 6(3).
      Permanent Research Commons link: https://hdl.handle.net/10289/9480
      Abstract
      Publically funded biobanking initiatives and genetic research should contribute towards reducing inequalities in health by reducing the prevalence and burden of disease. It is essential that Maori and other Indigenous populations share in health gains derived from these activities. The Health Research Council of New Zealand has funded a research project (2012-2015) to identify Maori perspectives on biobanking and genetic research, and to develop cultural guidelines for ethical biobanking and genetic research involving biospecimens. This review describes relevant values and ethics embedded in Maori indigenous knowledge, and how they may be applied to culturally safe interactions between biobanks, researchers, individual participants, and communities. Key issues of ownership, privacy, and consent are also considered within the legal and policy context that guides biobanking and genetic research practices within New Zealand. Areas of concern are highlighted and recommendations of international relevance are provided. To develop a productive environment for "next-generation" biobanking and genomic research,"‘next-generation" regulatory solutions will be required.
      Date
      2015
      Type
      Journal Article
      Publisher
      Scholarship@western
      Rights
      This work is licensed under a Creative Commons Attribution-No Derivative Works 4.0 License.
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      • Law Papers [294]
      • Māori and Indigenous Studies Papers [136]
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