“Apparently Everywhere, But Really Nowhere”

Françoise Baylis appeals for the CIHR to implement the recommendations of the Task Force on Ethics Reform.

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Last week, the Canadian Institutes of Health Research (CIHR) made public the Final Report of the Task Force on Ethics Reform at the Canadian Institutes of Health Research.  This Report to the CIHR Governing Council, co-authored by Bartha Knoppers, Timothy Caulfield, Jim Lavery, Michael McDonald and Daryl Pullman, is nothing short of inspiring.

The Final Report forcefully reminds the Governing Council of CIHR that the organization “has a clear legal obligation to have a strong and substantive ethics programme as an essential part of its broader mandate to improve the health of all Canadians.”  This is in sharp contrast to the frequent reminders issued by the President of CIHR, emphasizing the organization’s legal obligation to encourage innovation, facilitate the commercialization of health research in Canada, and promote economic development through health research in Canada – all the while remaining silent on ethics.

Infinity Bridge, Stockton, England

Infinity Bridge, Stockton, England

The Final Report not only underlines CIHR’s legal obligation to promote ethics, it also carefully documents the myriad ways in which CIHR has failed to meet this legal obligation.  One of the many failures identified is the long-term absence of strong ethics leadership which has allowed the ethics portfolio to drift and eventually run aground (my words). The Report calls for strong leadership vested in a person “with sufficient independence and decision-making authority to implement and give effect to CIHR’s statutory mandate in ethics”. This, the Task Force suggests, requires the creation of the position of Vice President of Ethics.

A second failure identified in the Final Report is the lack of integration of ethics across CIHR. This has not only resulted in failures to actively contribute to the identification of emerging ethical issues, but has also hindered the development of a culture of ethics within the organization.  This lack of integration also explains confusion around the mandate (roles and responsibilities) of the various ethics entities within CIHR including the Ethics Office, the Standing Committee on Ethics, and the Institute Advisory Board Ethics Designates. The Task Force recommends an organizational restructuring to address these problems, the most acute of which is the perception that ethics at CIHR is “apparently everywhere, but really nowhere.”

A third failure noted in the Final Report draws attention to the fact that whereas ethics was valued at the level of the President and the Governing Council of CIHR under the inaugural President Alan Bernstein, as evidenced by the reporting structure in place at that time, its stature within the organization has been diminished under the current President Alain Beaudet.  In response, the Task Force recommends that the VP Ethics report directly to the CIHR Governing Council and have a seat on the Science Council and Governing Council.

In addition to comments about administrative and organizational issues, the Final Report also emphasizes the contribution of ethics to knowledge production.  Ethics at CIHR should be about so much more than the service work of research ethics and governance.  It should also be about funding research at the intersection of ethics and health. To facilitate “research in ethics” and not just “ethics in research”, the Task Force recommends that CIHR “dedicate at least 3% of its research budget to research in ethics, distributed by the EO [Ethics Office] or the Institutes.” Three percent of a billion dollar budget would obviously be transformative for research in ethics in Canada.

One can only hope that this clear (and damning) Report will motivate the powers that be to take the requisite steps to ensure that CIHR meets its legal obligations regarding ethics.  Kudos to the members of the Task Force on Ethics Reform for issuing such a clear Final Report.  Governing Council needs to embrace the Task Force’s recognition of past failures and recommendations for radical course corrections if all public trust in ethics at CIHR is not to be lost – “a strong ethics programme at CIHR is not optional; it is essential to the role CIHR plays in Canada’s democratic society.”

All text in quotation marks is from the Final Report of the Task Force on Ethics Reform at the Canadian Institutes of Health Research.

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Françoise Baylis is a Professor and Canada Research Chair in Bioethics and Philosophy at Dalhousie University, Halifax, Canada.

Conflict of Interest: Françoise Baylis was the CIHR Institute Advisory Board Ethics Designate for the Institute of Genetics in 2000.  From 2001 to 2003, she was the ethics member of the CIHR Governing Council and Co-Chair of the CIHR Standing Committee on Ethics.  Since 2009, she is the CIHR Institute Advisory Board Ethics Designate for the Institute of Gender and Health.  The views expressed herein are her own.

One comment

  1. Françoise, I was delighted to see the graceful Infinity bridge, which is outside my office here at the Queen’s Campus of Durham University, featured in your blog. However, you should know that it’s sometimes referred to in these parts as “the bridge to nowhere” … All the best, Ted Schrecker

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