Shifting practise: recognizing Indigenous rights holders in research ethics review

摘要

Purpose - For many Indigenous nations globally, ethics is a conversation. The purpose of this paper is to share and mobilize knowledge to build relationships and capacities regarding the ethics review and approval of research with Indigenous peoples throughout Atlantic Canada. The authors share key principles that emerged for shifting practices that recognize Indigenous rights holders through ethical research review practice. Design/methodology/approach - The NunatuKavut Inuit hosted and led a two-day gathering on March 2019 in Happy Valley-Goose Bay, Newfoundland and Labrador, to promote a regional dialogue on Indigenous Research Governance. It brought together Indigenous Nations within the Atlantic Region and invited guests from institutional ethics review boards and researchers in the region to address the principles-to-policy-to-practice gap as it relates to the research ethics review process. Called "Naalak", an Inuktitut word that means "to listen and to pay close attention", the gathering created a dynamic moment of respect and understanding of how to work better together and support one another in research with Indigenous peoples on Indigenous lands. Findings - Through this process of dialogue and reflection, emergent principles and practices for "good" research ethics were collectively identified. Open dialogue between institutional ethics boards and Indigenous research review committees acknowledged past and current research practices from Indigenous peoples' perspectives; supported and encouraged community-led research; articulated and exemplified Indigenous ownership and control of data; promoted and practiced ethical and responsible research with Indigenous peoples; and supported and emphasized rights based approaches within the current research regulatory system. Key principles emerged for shifting paradigms to honour Indigenous rights holders through ethical research practice, including: recognizing Indigenous peoples as rights holders with sovereignty over research; accepting collective responsibility for research in a "good" way; enlarging the sphere of ethical consideration to include the land; acknowledging that 'The stories are ours" through Indigenous-led (or co-led) research; articulating relationships between Indigenous and Research Ethics Board (REB) approvals; addressing justice and proportionate review of Indigenous research; and, means of identifying the Indigenous governing authority for approving research. Research limitations/implications - Future steps (including further research) include pursuing collective responsibilities towards empowering Indigenous communities to build their own consensus around research with/in their people and their lands. This entails pursuing further understanding of how to move forward in recognition and respect for Indigenous peoples as rights holders, and disrupting mainstream dialogue around Indigenous peoples as "stakeholders" in research. Practical implications - The first step in moving forward in a way that embraces Indigenous principles is to deeply embed the respect of Indigenous peoples as rights holders across and within REBs. This shift in perspective changes our collective responsibilities in equitable ways, reflecting and respecting differing impetus and resources between the two parties: "equity" does imply "equality". Several examples of practical changes to REB procedures and considerations are detailed. Social implications - What the authors have discovered is that it is not just about academic or institutional REB decolonization: there are broad systematic issues at play. However, pursuing the collective responsibilities outlined in our paper should work towards empowering communities to build their own consensus around research with/in their people and their lands. Indigenous peoples are rights holders, and have governance over research, including the autonomy to make decisions about themselves, their future, and their past. Originality/value - The value is in its guidance around how authentic partnerships can develop that promote equity with regard to community and researcher and community/researcher voice and power throughout the research lifecycle, including through research ethics reviews that respect Indigenous rights, world views and ways of knowing. It helps to show how both Indigenous and non-Indigenous institutions can collectively honour Indigenous rights holders through ethical research practice.