Literature DB >> 27179021

"What Do They Really Mean by Partnerships?" Questioning the Unquestionable Good in Ethics Guidelines Promoting Community Engagement in Indigenous Health Research.

F Brunger1, D Wall2.   

Abstract

Academics and community members collaborated in research to examine how best to apply ethics guidelines for research involving Indigenous communities in a community with complex and multiple political and cultural jurisdictions. We examined issues of NunatuKavut (Southern Inuit) authority and representation in relation to governance of research in a context where community identity is complex and shifting, and new provincial legislation mandates centralized ethics review. We scrutinize the taken-for-granted assumption of research ethics that community engagement is an unquestionable "good." We examine the question of whether and how research ethics guidelines and associated assumptions about the value of community engagement may be grounded in, and inadvertently reinforce, ongoing colonialist relations of power. We present findings that community engagement-if done uncritically and in service to ethics guidelines rather than in service to ethical research-can itself cause harm by leading to community fatigue, undermining the community's ability to be effectively involved in the research, and restricting the community's ability to have oversight and control over research. We conclude by suggesting that the laudable goal of engaging communities in research requires careful reflection on the appropriate use of resources to operationalize meaningful collaboration.

Entities:  

Keywords:  Labrador; Southern Inuit; community and public health; ethics; methodology; moral perspectives; participant observation; qualitative

Year:  2016        PMID: 27179021     DOI: 10.1177/1049732316649158

Source DB:  PubMed          Journal:  Qual Health Res        ISSN: 1049-7323


  6 in total

1.  Improving health research among Indigenous Peoples in Canada.

Authors:  Sarah Hyett; Stacey Marjerrison; Chelsea Gabel
Journal:  CMAJ       Date:  2018-05-22       Impact factor: 8.262

2.  Research governance in NunatuKavut: engagement, expectations and evolution.

Authors:  Julie Bull; Amy Hudson
Journal:  Int J Circumpolar Health       Date:  2019 Jan-Dec       Impact factor: 1.228

3.  Data Management in Health-Related Research Involving Indigenous Communities in the United States and Canada: A Scoping Review.

Authors:  R Brian Woodbury; Julie A Beans; Vanessa Y Hiratsuka; Wylie Burke
Journal:  Front Genet       Date:  2019-10-10       Impact factor: 4.599

4.  Working in partnership with communities to improve health and research outcomes. Comparisons and commonalities between the UK and South Africa.

Authors:  Patricia Wilson; Azwihangwisi Helen Mavhandu-Mudzusi
Journal:  Prim Health Care Res Dev       Date:  2019-09-10       Impact factor: 1.458

5.  What does it mean to conduct participatory research with Indigenous peoples? A lexical review.

Authors:  Ann Dadich; Loretta Moore; Valsamma Eapen
Journal:  BMC Public Health       Date:  2019-10-29       Impact factor: 3.295

Review 6.  Community engagement approaches for Indigenous health research: recommendations based on an integrative review.

Authors:  Chu Yang Lin; Adalberto Loyola-Sanchez; Elaine Boyling; Cheryl Barnabe
Journal:  BMJ Open       Date:  2020-11-27       Impact factor: 2.692

  6 in total

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