‘No consequences’ for violating human rights in privately funded research in Canada, says ethics expert

must adhere to certain ethical guidelines and standards. She believes that the PASS study clearly violated these standards and that the universities involved failed to properly review and approve the study.
Parente’s complaint to the Secretariat on the Responsible Conduct of Research highlights the need for stronger oversight and accountability in privately funded research studies in Canada. She argues that research participants, especially vulnerable populations like Indigenous children, need to be protected from unethical and harmful research practices.
The fact that the Secretariat does not have jurisdiction over privately funded clinical trials is a major gap in Canada’s research ethics system, according to Parente. She believes that this loophole leaves research participants vulnerable and without recourse if their rights are violated during a study.
The PASS study, conducted by the Biocybernaut Institute with funding from philanthropist Allan Markin, targeted Indigenous children in Saskatchewan with promises of increased intelligence, happiness, and the ability to overcome trauma. Participants were subjected to brainwave training in a manner that experts have described as weird, shocking, abusive, and unethical.
The approval of the study by the University of Regina and the University of Calgary’s research ethics boards has raised serious concerns about the review process and oversight of research studies in Canada. Both universities have launched internal reviews in response to the CBC investigation, but have been criticized for a lack of transparency and accountability.
Alma Stonestand, a participant in the PASS study, has called for someone to be held accountable for the harm caused to her and her daughter. She, along with other participants, have been left feeling violated and dehumanized by the study.
Parente’s efforts to raise awareness about the ethical issues in the PASS study and the broader implications for research ethics in Canada are crucial in ensuring that vulnerable populations are protected from exploitation and harm. She is calling for stronger oversight, transparency, and accountability in all research studies, particularly those involving Indigenous communities.
As the investigation into the PASS study continues, it is clear that there are significant gaps in Canada’s research ethics system that need to be addressed. The protection of research participants, especially vulnerable populations, should be a top priority for all research institutions and oversight bodies in the country.