Juliet Guichon puts in writing what many Canadian ethicists are wondering: Why do the Canadian Institutes of Health Research not want a person with ethics expertise at the helm of the ethics portfolio?
At the 2014 Canadian Bioethics Society Conference in Vancouver, the controversy about ethics leadership at the Canadian Institutes of Health Research (CIHR) precipitated a meeting.
About 60 to 80 scholars and practitioners of ethics gathered in a room with large windows offering a commanding view of Coal Harbour and the Coastal Mountains. With sun in the south lighting the breathtaking scene, it was hard not to gaze at the sheer beauty and the cruise vessels making their way into port from Alaska.
Inside the room, Professor Michael McDonald – recipient of the Canadian Bioethics Society 2009 Lifetime Achievement Award for his work on the governance of research and human research protection – spoke concisely and clearly. Professor McDonald was one of five expert members of a CIHR-appointed Task Force on Ethics Reform. He detailed the Task Force’s membership, mandate, communications and the extent of deliberations.
The resulting Final Report refers to the Canadian Institutes of Health Research Act, which explicitly gives the CIHR an ethics mandate. As it creates and translates health knowledge, the CIHR must do so by:
- promoting, assisting and undertaking research that meets the highest international scientific standards of excellence and ethics.
- fostering the discussion of ethical issues and the application of ethical principles to health research.
- monitoring, analyzing and evaluating issues, including ethical issues, pertaining to health or health research.
To help the CIHR fulfill its mandate, the Task Force made a key recommendation: “provide ethics leadership to CIHR.” The ethics leader “must have earned a standing within the research ethics community that is at least analogous to that of the Institutes’ Scientific Directors.” The point of the recommendation was pretty simple: ethics is important for CIHR and an ethics leader should lead the ethics portfolio.
Gazing out at the shipping lane, I reflected on Professor McDonald’s words which made a lot of sense.
Like CIHR, the cruise vessels that passed are governed by Canadian federal law. The law requires that cruise companies pay particular attention to safety, for example, by mandating fire boat drills and stipulating lifeboat capacity. Cruise line safety is led by safety experts.
Back in the room, CIHR’s newly appointed “ethics champion”, Dr. Jane Aubin, rose to address us. She showed us organizational charts of the CIHR. The clarity previously provided by Professor McDonald was obscured.
A Queen’s University gold medalist with a doctorate in medical biophysics, Dr. Aubin is an expert in the mammalian skeleton. Given her training and expertise, showing us the skeleton of the CIHR’s organization might have seemed an obvious teaching tool, but a fog descended upon the room.
Looking for my life vest, I asked from the back of the room, “Could you please tell us what training you have in ethics?” Dr. Aubin’s answer: none.
In the embarrassed silence, many of us did what people trained in ethics do: We quietly noted Dr. Aubin’s vulnerability. She had come to Vancouver apparently alone from Ottawa; she was suffering from a cold; and was doing her best to convince a knowledgeable ethics audience that all would be well with her, a person with no training in ethics, as the CIHR “ethics champion”.
Someone had placed her in this untenable position. Why?
We were all exceedingly polite; yet we were sad. In our respective workplaces, we teach the ethics equivalents of the Empress of Ireland and the Titanic. Obviously, trouble can arise in health research because of lack of understanding or inattention to ethics.
We didn’t (and still don’t) get it. Why would Ottawa not want a person with ethics expertise at the helm to avoid trouble, and to foster research in best practice? It is false economy to do otherwise, as the cruise industry knows. Should we wait for another Costa Concordia before valuing prevention experts?
Dr. Aubin is admirable. Sent on an impossible mission and at personal cost to her health, she stood bravely before us to say that ethics is in good hands at the CIHR.
Yet the prevailing fog suggests that this journey might not end well. Some of us fear what disaster might cause the tide to change.
Juliet Guichon is an Assistant Professor, Department of Community Health Sciences, Cumming School of Medicine, University of Calgary.