There are certainly plenty of people who think that research ethics scandals happen everywhere else, but not in Canada. Well, it seems that a recent report by food historian Ian Mosby at the University of Guelph has uncovered that, yes, in fact research ethics scandals can, do and have happened in Canada.
Mosby’s report, published in Histoire Sociale/Social History, provides “a narrative record of a largely unexamined episode of exploitation and neglect by the Canadian government” and describes ten years of nutritional experiments conducted on 1300 Aboriginal adults and children, including those in residential schools. These funded studies were done without community or individual consent, without an assessment of potential benefits and risks, without any consideration of the extreme vulnerability of the persons and without any clear humanitarian or altruistic aims or realization of benefits to any people involved while exposing them to real harms. That’s just the beginning of the problems.
The details of the report are horrific.
What is most shocking about this is that these researchers were in communities in which they already knew there were significantly higher general and infant mortality rates (compared to anywhere else at that time in Canada), high rates of malnutrition and hunger along with high rates of TB and other diseases, and yet when they arrived — and these documented facts were clearly confirmed by what they observed ‐ they saw this as a clear opportunity and a kind of living laboratory, rather than a humanitarian tragedy that required their intervention.
Many people, upon first hearing of these experiments, will wonder why the principles of research ethics were not followed here or why the obvious potential and actual ethical problems involved were not addressed in any way. Well, those who are familiar with research ethics know that, during the time these experiments were being conducted in Canada, the Doctor’s Trials were taking place in Nuremberg, Germany after the Second World War (1946-1947). Out of that trial came the Nuremberg Code which outlined ten principles of ethically sound research, including the requirement that research subjects must provide voluntary consent. This challenged the paternalistic approach to research that, in some cases, assigned little to no inherent value to persons who were simply research subjects and nothing more. But what’s important to realize is that it really isn’t the case that as soon as the Nuremberg Code was established, everything instantly got better for research subjects and researchers stopped exploiting persons. That didn’t happen and in many cases, research that was ethically problematic continued, despite the Nuremberg principles. It has taken many years for these principles to become the norm – to become realized, formalized, institutionalized and embedded in the culture of research. Consider the Tuskegee Syphilis Study which was not stopped until 1972 and only then after about 6 years of active lobbying by a persistent whistleblower.
According to the Toronto Star:
These experiments aren’t surprising to Justice Murray Sinclair, chair of the Truth and Reconciliation Commission. The commission became aware of the experiments during their collection of documents relating to the treatment and abuse of native children at residential schools across Canada from the 1870s to the 1990s.
It’s a disturbing piece of research, he said, and the experiments are entrenched with the racism of the time.
“This discovery, it’s indicative of the attitude toward aboriginals,” Sinclair said. “They thought aboriginals shouldn’t be consulted and their consent shouldn’t be asked for. They looked at it as a right to do what they wanted then.”
Here are some links to the media coverage of the release of the report:
Here, as well, is a link to Chapter 9 of the Canadian TriCouncil Policy Statement on Research involving the First Nations, Inuit and Métis peoples of Canada.