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

  • Fern Brunger Associate Professor of Health Care Ethics, Division of Community Health & Humanities, Faculty of Medicine, Memorial University;300 Prince Philip Drive, St. John’s, Newfoundland, A1B 3V6, Canada, (709) 777-7284; fbrunger@mun.ca
  • Rebecca Schiff Assistant Professor (Aboriginal Health), Division of Community Health & Humanities, Faculty of Medicine, Memorial University;300 Prince Philip Drive, St. John’s, Newfoundland, A1B 3V6, Canada, (709) 896-6212; rschiff@mun.ca
  • Melody Morton-Ninomiya PhD Candidate, Division of Community Health & Humanities, Faculty of Medicine, Memorial University; 300 Prince Philip Drive, St. John’s, Newfoundland, A1B 3V6, Canada, (709) 777-7284; melodym@mun.ca
  • Julie Bull PhD student, Department of Interdisciplinary Studies, University of New Brunswick, 100 Tucker Park Road, P.O. Box 5050, Saint John, New Brunswick, E2L 4L5, Canada. julierbull@gmail.com. Member of NunatuKavut, Labrador, http://www.nunatukavut.ca

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.

Published
2014-12-19
Section
Research Papers