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“You Want to do What? To Whom?” The Ethics of Research involving Human Subjects

013-KreugerBy Devin Kreuger

Human beings are curious creatures, and as such, we hunger for new knowledge and understanding. Thanks to our curious nature, we’ve reaped tremendous benefits for our society. In the social sciences and humanities, we’ve uncovered insights into cultures, lifestyles and human behaviours. And in the sciences, we’ve invented new technology, discovered new medical treatments, and daily we develop an increasingly better understanding of the world around us.

Ethics-1When that curiosity for new knowledge and insight requires interaction with other people, be that through surveys or interviews, or more invasive techniques, such as blood or tissue samples, or even pharmaceutical testing, researchers must pause to take stock of the work they’re proposing to do.

Unfortunately, research involving human subjects has not always been done ethically. The Tuskegee Syphilis Experiment by the U.S. Public Health Service, and Canada’s research in the 40’s on malnourished First Nations children highlight that science hasn’t always been practiced ethically.

Here in Canada, university researchers are obligated to comply with the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Under that policy, when research involving human subjects is being contemplated there are key elements to be considered…

Research Risk:  Will the person participating in the study be exposed to risks greater than what one might reasonably expect to face in the course of regular daily living? Generally speaking, if a research project involves asking demographic questions, political opinions, or exploring other relatively common topics, it would be assessed as a ‘low risk’ research plan. But if the research involves medical procedures, or delving into sensitive topics that may be triggering for people, it would be classified as ‘high risk’.


Group Vulnerability
: Who is being asked to participate in the research? Is it an open call for anyone willing to volunteer, or is the researcher targeting a particular population? If the research population consists primarily of people with pre-existing vulnerabilities, such as health conditions, or cognitive/emotional factors, then the group would be designated as ‘vulnerable’. This is why research involving children, or institutionalized people, is very highly scrutinized before research can proceed.

Informed Consent: Ultimately, at the core of ethical research is the concept of free, informed consent. Human research subjects must never be coerced into participating in a study, and before they agree to participate, they must be able to clearly understand the intent of the research project and how any information or data they provide to a researcher will be used.

Modern day researchers know what those in the 40’s seem to have overlooked—it is unacceptable to treat people as a means to an end, especially when using them as research subjects. Researchers today respect human dignity, and they know that people volunteering to participate in research studies must not be subjected to unnecessary risks or harms.

Devin Kreuger is Director of the Office of the Vice-Principal Research at the University of Toronto Mississauga. He can be contacted at [email protected] Visit www.utm.utoronto.ca/research

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