The ethics of research involving Canada's Aboriginal populations

The recent publication of 2 epidemiologic studies examining Aboriginal populations^1,2 raises ethical concerns. Neither study describes any consultations with First Nations or Métis community members in the formulation of the research questions, development of the research protocols, interpretation of the data or dissemination of the results. This apparent lack of consultation is particularly problematic given that both studies could have policy implications that would affect First Nations and Métis individuals and communities. A related ethical and methodologic concern is raised by the use of “Aboriginality” as a risk factor in the multivariate analyses of both studies.

As a health research scientist trained in the Western academic disciplines of medicine and public health and as a Métis woman, I respect the efforts of these authors to produce much-needed information on the health of First Nations and Métis peoples. However, I have come to understand that it is only through an approach of mutual understanding, respect and partnership that academic research will be able to contribute to improving the health outcomes in First Nations, Métis and Inuit communities.^3,4,5,6,7,8

“Aboriginality” is a social construct with little grounding in the day-to-day realities of the heterogeneous groups to which it refers. Tremendous cultural, historical, socioeconomic and political diversity exists between and within these groups. What is shared is the experience of colonization and the resultant legacy of poverty and social stressors. Use of this pan-ethnic term as one of several “risk” variables, while perhaps necessary to achieve adequate study power, devalues the unique experiences of First Nations, Métis and Inuit communities and perpetuates colonial processes of marginalizing or “pathologizing” Aboriginal peoples.

Methodologically, the use of the “Aboriginal” variable in the study by Tonelli and associates¹ is problematic. Cox regression analysis assumes that the effects of different variables on survival are constant over time and are additive, but I am not sure that these assumptions are met with respect to the “Aboriginality” factor. Rather, there may be an interaction or multiplicative effect between “Aboriginality” and socioeconomic status, for example. In the study by Wenman and colleagues² there are methodologic problems with the way in which ethnicity was determined. In addition, multiple-ethnicity responses, such as Caucasian and First Nations, were excluded, and the study was underpowered because the sample of First Nations and Métis women was insufficient.

The editorial by Alan Cass⁹ does not address the ethical issues raised by the apparent lack of Aboriginal consultation or the ethical problems relating to the use of the pan-ethnic “Aboriginal” category as a risk factor for disease.

If “Aboriginality” is the factor that these scientists are interested in understanding, I suggest that they start by building relationships with one or more First Nations, Métis or Inuit communities. They may be pleasantly surprised by how quickly this approach will provide new insights and perspectives regarding Aboriginal health and medicine more generally.

Janet Smylie Director, Indigenous Peoples Health Research Centre Associate Professor Department of Community Health and Epidemiology University of Saskatchewan Saskatoon, Sask.