Abstract
<p><strong>BACKGROUND:</strong> The objective of this paper is to identify key ethical issues associated with biological sampling in Aboriginal populations in Canada and to recommend approaches that can be taken to address these issues.</p><p><strong>METHODS:</strong> Our work included the review of notable biological sampling cases and issues. We examined several significant cases (Nuu-chah-nult people of British Columbia, Hagahai peoples of Papua New Guinea and the Havasupai tribe of Arizona) on the inappropriate use of biological samples and secondary research in Aboriginal populations by researchers.</p><p><strong>RESULTS:</strong> Considerations for biological sampling in Aboriginal communities with a focus on community-based participatory research involving Aboriginal communities and partners are discussed. Recommendations are provided on issues of researcher reflexivity, ethical considerations, establishing authentic research relationships, ownership of biological material and the use of community-based participatory research involving Aboriginal communities.</p><p><strong>CONCLUSIONS:</strong> Despite specific guidelines for Aboriginal research, there remains a need for biological sampling protocols in Aboriginal communities. This will help protect Aboriginal communities from unethical use of their biological materials while advancing biomedical research that could improve health outcomes.</p>
Highlights
General agreement exists in the literature that Aboriginal populations are commonly targeted for health research suggesting that they need to protect their communal identity, social structures and rights in biomedical research (Arbour & Cook, 2006; Castellano, 2004; Weijer & Anderson, 2002; Weijer, Goldsand, & Emanuel, 1999; Williams, Chagnon, & Spielman, 2002; Wilson & Young, 2008)
Recommendations are provided on issues of researcher reflexivity, ethical considerations, establishing authentic research relationships, ownership of biological material and the use of community-based participatory research involving Aboriginal communities
Despite specific guidelines for Aboriginal research, there remains a need for biological sampling protocols in Aboriginal communities
Summary
General agreement exists in the literature that Aboriginal populations are commonly targeted for health research (e.g., the Yanomamö communities in Venezuela and Brazil) suggesting that they need to protect their communal identity, social structures and rights in biomedical research (Arbour & Cook, 2006; Castellano, 2004; Weijer & Anderson, 2002; Weijer, Goldsand, & Emanuel, 1999; Williams, Chagnon, & Spielman, 2002; Wilson & Young, 2008). Aboriginal communities are becoming more self-sufficient (Aboriginal Affairs Nothern Development Canada, 2014); they are moving towards self-determination but may need specific research ethics guidelines that protect their communities, their peoples and their genetic material. The term ‘Aboriginal’ is defined in Section 35 of the Canadian Constitution and refers to people who are legally recognized as Indian, Inuit, or Métis (Indian and Northern Affairs Canada, 2004). The Aboriginal population has increased by 20.1% since 2006 while the non-Aboriginal population has increased by only 5.2% (Statistics Canada, 2013). This growth in population could have implications for health outcomes, health policy, and health service delivery.
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