Animating the concept of “ethical space”: The Labrador Aboriginal Health Research Committee Ethics Workshop

Abstract

This paper reports on an innovative process by which the Inuit and First Nations communities of Newfoundland and Labrador confronted and challenged the policies and procedures of the provincial research ethics system. We describe the ways in which these communities engaged with health and university research review administrators to exchange information, identify challenges with existing processes, and outline a strategy for movement forward. We highlight the innovative structure of the process, and show how that resulted in immediate and ongoing community-led reforms to the provincial research ethics boards. Key to the success of the workshop was the fact that diverse stakeholders—community members, community research review administrators, research ethics board administrators, and health board research administrators—came together in an ethical space and worked together to critically interrogate the bureaucratic structure of the government, health, and university-based ethics review processes in the province. Recommendations arising from this process led to changes in the governance of health research involving the province’s Indigenous communities.

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