Michael McDonald and Daryl Pullman offer their observations on the dialogue at the recent CBS annual meeting on the state of ethics at CIHR.

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At the 2014 meeting of the Canadian Bioethics Society in Vancouver, a special session was held to have a dialogue around the report of the Task Force on Ethics Reform at the CIHR and the response of CIHR management to that report.   The session was very well attended – standing room only.

Michael McDonald gave a brief overview of the Task Force Report and offered a number of other observations based on his 40 years of experience and leadership in health research ethics in Canada. Dr. Jane Aubin, Chief Scientific Officer and V-P Research at CIHR, discussed CIHR’s proposals for dealing with the ethics leadership issue.  Following the presentations, members of the audience — many of them individuals with experiences on various CIHR committees including Institute Advisory Boards and the Standing Committee on Ethics — offered comments and posed questions.  As members of the task force we offer the following observations on this session.

(1) There was general appreciation of Dr. Aubin’s willingness to come to the discussion and to be present throughout the CBS meeting including attendance at various presentations.  We hope she went away with a deeper appreciation for the depth and breadth of work in bioethics.

(2) It was clear from Dr. Aubin’s presentation and response to audience questions that, to use Margaret Thatcher’s self-description, “the lady (and the organization) are not for turning.”  Yes, Dr. Aubin listened politely and responded diplomatically to criticisms, but it was clear that she, and she alone, was now the “ethics champion” at CIHR.  Thus, while Dr. Aubin and CIHR recognize that there is an urgent need for ethics leadership within the organization, the Task Force’s main recommendation to place that leadership in the hands of a person with stature and expertise in ethics has been completely rejected.  Instead, CIHR plans to rely on Canadian and international ethics experts to advise Dr. Aubin on leadership strategies.

(3) Audience members noted the important difference between being a champion and being a leader, and on whether expertise is supplied internally or externally.  Several spoke of their experiences working with CIHR, reinforcing the major finding of the Task Force, that there is a real and steadily worsening crisis in terms of ethics leadership at CIHR.  Dr. Aubin acknowledged that she was not an expert in ethics, but insisted repeatedly that she would be advised by those who were experts.  This, to us, ignores the results of the “natural experiment” that has gone on since the founding of CIHR in 2000.  To put it mildly, CIHR has had numerous, outspoken and intrepid external ethics experts as advisors over the past 14 years, yet the situation has deteriorated to the crisis point we face now.  Rhetorically, we would ask whether CIHR would appoint a non-expert as leader for any of its Institutes.  The answer to that is obvious – such a proposal would be rejected by the research community and the public as lacking credibility and validity.

(4) We found problematic Dr. Aubin’s comment on the need to find “metrics” to measure progress on ethics leadership at CIHR.  While not inherently opposed to the use of some metrics in ethically sensitive areas, we worry that the use of inappropriate and simplistic metrics can be practically and morally mischievous and misleading.

(5) We find CIHR’s management response personally and professionally disheartening.  We, like all members of the Task Force, have devoted our careers to work in ethics and lent our expertise to CIHR in numerous capacities including in CIHR’s creation.  In effect, the Task Force report was written from the perspective of those deeply committed to CIHR’s mandate and mission. McDonald in particular spoke about his more than four decade career in ethics leadership including the creation of the applied ethics theme at SSHRC, the founding of a centre for applied ethics, his instrumental role in developing the TCPS on Research Involving Humans, numerous grants and publications on research governance, and his role in mentoring the next generation of health research ethicists.  For those who have devoted their careers to this work it is difficult not to take CIHR’s response on the leadership issue personally.

(6) We realize this leaves Canadian bioethicists in a very difficult position.  We are hopeful that the Canadian Bioethics Society will depart from its practice of silence on policy issues and in this case take a strong collective stand on the ethics leadership question at CIHR.  But this still leaves individual bioethicists, most of whom are earlier in their career paths than we are, with hard choices to make.  As one mid-career bioethicist pointed out, CIHR remains an important source of funding and opportunities for affecting policy for those working in bioethics.  We offer no specific guidance on the individual choice to continue working from within CIHR by sitting on various committees, institutional advisory boards, and peer review committees despite the lack of clear ethics leadership, or to continue voicing discontent by refusing to participate in these activities and roles.  It is lamentable that CIHR has put us in this situation.

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Michael McDonald is Professor Emeritus, Faculty of Medicine, University of British Columbia, Vancouver, Canada, and was a member of the Task Force on Ethics Reform at the CIHR.

Daryl Pullman is a Professor of Medical Ethics, Faculty of Medicine, Memorial University, St. John’s, Canada, and was a member of the Task Force on Ethics Reform at the CIHR.