DNA on Loan: Issues to Consider when Carrying Out Genetic Research with Aboriginal Families and Communities

Abstract

In the current research milieu where genetic etiology is considered a critical component in the discovery of pathogenesis, aboriginal families and communities affected with genetic conditions may be considered as research participants. However, because of concerns about the impact of genetic information and historical harmful research practices, some aboriginal communities have considerable unease when faced with this prospect. Therefore, in the circumstance that genetics is considered an important part of research inquiry by aboriginal families and communities, there needs to be assurance that the research will be carried out according to mutual expectations. A research relationship that respects aboriginal individuals and communities within their culture and is in keeping with their values is essential. This respect extends to the use of biological samples, considering the DNA to be ‘on loan’ to the researcher for the purpose of the research for which consent was obtained. This paper will explore practical ways of maintaining a respectful research relationship when genetics research with aboriginal people is undertaken.

Ethics of Biological Sampling Research with Aboriginal Communities in Canada

“…The main reasons for these criticisms is that "the purposes and meaning associated with [research on Aboriginal communities] by academics and government agents were usually alien to the Aboriginal people themselves and the outcomes were, as often as not, misguided and harmful" (Castellano, 2004, p. 98). Therefore, research has historically been a source of unease and distress in Aboriginal populations (Arbour & Cook, 2006;Castellano, 2004;Cochran et al, 2008). Some of the criticisms include "lack of involvement of the community in the planning of the project, insensitivity to cultural beliefs, … potential stigma of research results, lack of feedback to the community once a project is completed, commercial ownership of DNA and overall impressions of exploitation of the communities" (Arbour & Cook, 2006).…”

“…Therefore, research has historically been a source of unease and distress in Aboriginal populations (Arbour & Cook, 2006;Castellano, 2004;Cochran et al, 2008). Some of the criticisms include "lack of involvement of the community in the planning of the project, insensitivity to cultural beliefs, … potential stigma of research results, lack of feedback to the community once a project is completed, commercial ownership of DNA and overall impressions of exploitation of the communities" (Arbour & Cook, 2006). Furthermore, there are concerns about insensitivity to cultural beliefs around the human body and human tissue samples.…”

“…In one Canadian case, blood samples collected from a First Nation community in British Columbia (800 people of Nuu-chah-nult origin) that were supposed to be used to study rheumatic disease but were instead used to establish ancestry lines (Arbour & Cook, 2006;Atkins et al, 1988). This case raised awareness of the mistreatment of Aboriginal populations in research studies.…”

“…The fact that many people believed this story illustrates the negative reputation of academic researchers among many Aboriginal peoples. These cases, and others like it, have been brought to public attention and have prompted some Aboriginal communities to become extremely cautious about research and for some to develop their own research guidelines (Arbour & Cook, 2006;Cochran et al, 2008).…”

“…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). Despite centuries of colonialism, 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.…”