Ethics at CIHR
CIHR is Canada’s major health research funding agency. It was established in 2000 under the authority of the Canadian Institutes of Health Research Act, as an independent government agency. According to CIHR, its mission is “to create new scientific knowledge and to enable its translation into improved health, more effective health services and products, and a strengthened Canadian health care system”. In addition, CIHR maintains it is committed to meeting the highest standards of health research excellence, as well as strengthening the culture of research ethics and integrity in Canada.
As legislatively mandated, CIHR is responsible for “promoting, assisting and undertaking health research that meets the highest standards of ethics”, “fostering the discussion of ethical issues and the application of ethical principles to foster health research” and “monitoring, analyzing and evaluating ethical issues pertaining to health or health research”. However, since its inception CIHR has experienced persistent problems in meeting its ethics mandate.
In 2012, CIHR’s Governing Council established a Task Force on Ethics Reform at CIHR. The objective of this Task Force was to evaluate whether CIHR’s organizational structure was optimal for meeting the ethics mandate and to identify opportunities to improve efficacy and impact.
The Task Force recommended that the fulfillment of CIHR’s legislated mandate in ethics requires a “vision for ethics” that is grounded in strong ethics leadership at every level of the CIHR corporate structure. This vision defines ethics as having “a range of functions from ancillary/ regulatory functions (such as corporate due diligence, public relations, and knowledge translation) to knowledge generation functions (strategic vision and planning, normative frameworks)”. In particular, ethics should play a central role in the creation of new knowledge, ensure that innovation takes place in an ethical and sustainable manner, and facilitate the translation of research into improvements in healthcare. Most importantly, the Task Force maintains that the realization of this vision for ethics requires strong ethics leadership at the executive level. Accordingly, the Task Force’s key recommendation is that a position of Vice President of Ethics should be created at CIHR. CIHR Management rejected the Task Force’s key recommendation.
Below, we chronicle this ongoing saga.
Important Events
July 2013 - The CIHR-appointed Task Force on Ethics Reform at CIHR finds that CIHR is failing to meet its legislated mandate. The Task Force’s Final Report [PDF - 380 KB] includes 20 substantive recommendations, most of which are anchored in the call for ethics leadership by a person “recognized nationally and internationally as a leading scholar and researcher in ethics.” The proposed VP Ethics position is referenced in 15 of the Task Force’s 20 recommendations. The Task Force insists that the VP Ethics have a strong mandate “taken directly from CIHR’s founding statute”, the Canadian Institutes of Health Research Act (S.C.2000, c.6).
November 22, 2013 - The President’s Office at CIHR officially releases the findings of Task Force on Ethics Reform, which concludes that CIHR has failed to fulfill a leadership role in ethics (Extract of recommendations from the report as posted at CIHR).
December 2, 2013 - Françoise Baylis, in her role as IABED for the Institute of Gender and Health, publicly endorses the Task Force’s recommendations, including the proposed creation of a VP Ethics (see “Apparently everywhere, but really nowhere”). Other IABEDs also voice their support for the Task Force recommendations, which, if implemented, could be an important first step in addressing a range of challenging ethical issues including the structural conflict of interest regarding the funding of research and the governance of research ethics.
December 18, 2013 - A draft Ethics Action Plan is shared with Institute Advisory Board Ethics Designates (IABEDs). The plan suggests that there is little support for the idea of a Vice President of Ethics. View the minutes from the December 2013 IABED teleconference. [PDF - 107 KB]
February 2014 - CIHR eschews a majority of the Task Force’s recommendations and in response to the Task Force report. A “refreshed Ethics Action Plan” is developed in response to the Task Force recommendations and is reviewed by the Governing Council at its February 2014 meeting [PDF - 45 KB].
February 25, 2014 - Françoise Baylis and Jocelyn Downie issue a Mayday call to Parliament with respect to ethics at CIHR (“Mayday, Mayday, Mayday” for Ethics at CIHR).
February 28, 2014 - The Vice-Chair of the CIHR Standing Committee on Ethics adds her voice to the growing chorus of disapproval at the CIHR’s response to the Task Force. She writes: “I must express my disappointment that the primary recommendation of the Ethics Task Force Report [expert leadership devoted to ethics] has been abandoned.”
March 10, 2014 - The Task Force expresses disappointment with the CIHR Management Response [PDF - 45 KB]. In an open letter [PDF - 335 KB] to Alain Beaudet (CIHR President) and Jane Aubin (Chief Scientific Officer/Vice-President of Research at CIHR), the members of the Task Force state: “To speak plainly, we do not see the plan proposed as a significant advance beyond the current situation at CIHR – one in which ethics has been pushed to [the] periphery.”
March 13, 2014 - The common concerns of the Task Force on Ethics Reform, the Standing Committee on Ethics, and the Institute Advisory Board Ethics Designates (IABEDs) are summarized in a Research Money article by Mark Henderson [PDF - 136 KB].
March 25, 2014 - The CIHR Institute Advisory Board Ethics Designates unanimously write to the CIHR [PDF - 254 KB] that ethics leadership “can only be assumed by a reputable expert in this area.” Specifically, they worry that the CIHR response to the Task Force report “sends a contradictory message that leading ethics within CIHR does not require relevant knowledge, expertise or experience in spite of CIHR’s commitment to evidence-based medicine.” The Ethics Designates also express their disappointment in the fact that “throughout the process of putting together the Management Plan, CIHR neglected to consult with us or engage us in discussion.” They further note that it is surprising given the “easy access to a range of leading Canadian experts in ethics, CIHR Management, CIHR Science Council and CIHR Governing Council have not seen yet the relevance of the input of the ethics designates into an ongoing process central to our initial nomination and ongoing presence as members of Institute Advisory Boards.”
March 27, 2014 - In response to mounting pressure, Jane Aubin of CIHR sends a letter (dated March 25) officially responding [PDF - 37 KB] to the March 10th letter from the CIHR Task Force on Ethics Reform.
April 4, 2014 - Udo Schuklenk, an Ontario Research Chair in Bioethics and Public Policy, writes a column in the Kingston Whig-Standard, “How about professional ethics oversight at the Canadian Institutes of Health Research,” regarding ethics at CIHR.
April 8, 2014 - Fern Brunger, an Associate Professor of Health Care Ethics at Memorial University writes “CIHR's Decision on ‘Ethics’: Yet another Canadian Story” for the Impact Ethics blog.
April 10, 2014 - Chris Kaposy writes an open letter to the Members of Parliament and Senators, requesting action on “a significant problem with ethics at CIHR.” The letter is signed by fifty esteemed health ethics researchers from across Canada, representing every major university where health research is conducted. This complements the March 25, 2014 letter from the CIHR Institute Advisory Board Ethics Designates [PDF - 254 KB].
May 12, 2014 - The federal Health Minister Rona Ambrose responds to a formal Question on the Order Paper [PDF - 3.2 MB] from federal NDP Deputy Leader and Health Critic Libby Davies on ethics reform at the CIHR. The question, submitted by Ms. Davies on March 27 is a follow-up to her March 25th open letter to Minister Ambrose [PDF - 424 KB]. It reads as follows (emphasis added):
With regard to the February 2014 Canadian Institutes for Health Research (CIHR) Management Response to the recommendations of the Final Report of the Task Force on Ethics Reform, approved by the Governing Council of the CIHR: (a) precisely what information was gathered through “the international environmental scan”; and (b) what specific recommendations, in support of the recent appointment of Dr. Jane Aubin as the “Ethics Champion,” and Dr. Paul Garfinkel as Chair of the Standing Committee on Ethics, were given to CIHR Management and CIHR Governing Council by each of (i) the CIHR Science Council, (ii) the CIHR Standing Committee on Ethics, (iii) the CIHR Institute Advisory Board Ethics Designates?
Minister Ambrose's official response [PDF - 3.2 MB] ducks the question by avoiding specifics (see the official question, (Q-394) on the Parliament of Canada website). This is unfortunate, as many in the ethics community openly criticize the current situation regarding ethics at CIHR.
June 16 and 24, 2014 - Two of the 12 sitting CIHR Institute Advisory Board (IAB) Ethics Designates resign: Chris Kaposy, the IAB Ethics Designate for the Institute of Infection and Immunity (June 16, 2014), and Françoise Baylis, the IAB Ethics Designate for the Institute of Gender and Health (June 24, 2014). Both Drs. Kaposy and Baylis cite their disappointment with the CIHR’s response to the Final Report of the Task Force on Ethics Reform [PDF - 380 KB].
Dr. Kaposy notes in his letter [PDF - 65 KB] that CIHR “has systematically undermined the role of its own ethics office, and has isolated the ethics designates serving on Institute Advisory Boards.” In her resignation letter [PDF - 105 KB], Dr. Baylis notes that she is “deeply disappointed” with the recent response from federal Minister of Health Rona Ambrose [PDF - 3.2 MB] regarding Ethics at CIHR as it includes false information.
June 26, 2014 - A special session on CIHR’s response to the Task Force on Ethics Reform at CIHR is held at the Annual General Meeting of the Canadian Bioethics Society (CBS). Following this meeting, letters are exchanged between CIHR’s “Ethics Champion” Dr. Aubin and the CBS President Ghislaine Cleret de Langavant (on behalf of the Canadian Bioethics Society). In her letter, Cleret de Langavant notes [PDF - 106 KB] that “CIHR’s approach to ethics leadership is felt by many in the field to undermine the notion of expertise in ethics and there is concern that this approach will disperse rather than strengthen ethics leadership at CIHR.” See the Canadian Bioethics Society website.
June 30, 2014 - In a post on the Impact Ethics Blog, Juliet Guichon questions why the CIHR does not want a person with ethics expertise at the helm of the ethics portfolio.
July 5, 2014 - Michael Cook publishes a short descriptive article in the Australian-based weekly bioethics newsletter (BioEdge) about the controversy surrounding ethics at CIHR.
June 5, 2014- Dr. Aubin writes a letter [PDF - 76KB] to the Canadian Bioethics Society and expresses gratitude for allowing her to participate in the special session on ethics leadership at CIHR. She asserts her willingness to engage with the bioethics community about ethics at CIHR.
July 11, 2014- Ghislaine Cleret de Langavant, President of the Canadian Bioethics Society (CBS) writes a response [PF - 106 KB] to Dr. Aubin, in which she draws a distinction between having a "champion for ethics" and having "strong leadership for ethics" and she re-emphasizes the need for "in-house scientific experts providing leadership". Cleret de Langavant states that the bioethics community remains concerned about ethics at CIHR and he invites further discussion and collaboration with CIHR.
July 12, 2014 - CIHR's media specialist David Coulombe responds to Cook’s column on Bioedge, and defends the CIHR's decision to not institute the Task Force's recommendation to create a VP Ethics at the CIHR. This public response (a first) comes after months of mounting criticism from the ethics community in Canada.
July 16, 2014 - The Canadian Medical Association Journal (CMAJ) reports [PDF - 289 KB] on the ongoing ethics controversy at CIHR, highlighting the resignation of Institute Advisory Board (IAB) Ethics Designates Chris Kaposy and Françoise Baylis. Tim Lougheed notes that these resignations “are part of a larger, ongoing critique mounted by specialists in this field, who have spent years insisting that CIHR has been shirking the health ethics mandate written directly into the Act of Parliament that created this agency in 2000.” This article comes on the heels of the CIHR's first public response to the widespread concern over the manner of its implementation of recommendations from the Task Force on Ethics Reform at CIHR [PDF - 380 KB].
November 25, 2014 - Ghislaine Cleret de Langavant writes a second response to Dr. Aubin calling for CIHR to "provide a formal, articulated rationale for its response to the Task Force." de Langavant also questioned the sufficiency of an "ethics champion" when what is really needed is ethics leadership, in the form of research ethics expertise, at CIHR.
November 28, 2014 - The Canadian Bioethics Society (CBS) announces that, in response to concerns expressed by the membership in opposition to the CIHR ‘Ethics Action Plan’ that effectively eliminates internal ethics expertise at CIHR, it will develop a strategy for consulting its members on core issues, such as ethics leadership at CIHR. With the support of the membership, the CBS plans to continue to act on the issue of ethics at CIHR.
Update: December 23, 2014 - Dr. Aubin writes a second letter of response to Dr. de Langavant explaining that "a refreshed Governing Council Standing Committee on Ethics (SCE) has been established as a key element in CIHR's endeavour to deliver on its ethics mandate." (Full composition of the SCE committee; Terms of Reference of the SCE committee; summary of key messages).
Impact Ethics Recommendations
At Impact Ethics we maintain that CIHR should follow the recommendations of the CIHR-appointed Task Force. In particular, we believe that strong ethics leadership is necessary for CIHR to fulfill its legislated ethics mandate.