Update from the CIHR Standing Committee on Ethics
A productive first year for members of the expanded committee
(2016-03-03) It has been a year and a half since the new Standing Committee on Ethics (SCE) first met in Ottawa, in September 2014. As CIHR’s Vice-President of Research, Knowledge Translation and Ethics, I am pleased to provide you with an update on some of the Committee’s excellent work since then, and plans for 2016.
The SCE is a Subcommittee of CIHR’s Governing Council, with a mandate to identify emerging ethical issues of strategic relevance with respect to health and health research. The SCE is also charged with providing the Governing Council with high-level strategic advice on the ethical, legal and socio-cultural dimensions of CIHR's mandate as set out in the CIHR Act, at its initiative or at the request of the Governing Council or the President.
In its refreshed form, the new SCE has an expanded membership that includes Canadian and international ethics experts, members of the public, CIHR Institute Scientific Directors, current and former Institute Advisory Board Ethics designates, and senior staff from CIHR and the Inter-Agency Secretariat on Responsible Conduct of Research. By bringing together a rich diversity of external representatives, alongside CIHR and Inter-Agency personnel as ex-officio members in the SCE, CIHR is in a position to integrate ethics fundamentally into the Agency’s core. In turn, the SCE is able to deliberate independently and is responsive to Governing Council. The Committee’s Terms of Reference, membership, and meeting highlights are posted on CIHR’s website.
Since September 2014, the SCE has met five times and has struck several working groups. It has deliberated on a wide range of topics, including the ethical aspects of innovative clinical trial methods, partnerships with the private sector in community-based participatory research initiatives, disruptive technologies, and crowdfunding. The SCE also responded to a request for advice on the Framework for Responsible Sharing of Health and Health-related Data of the Global Alliance for Genomics and Health, when CIHR was considering becoming a formal member of the Alliance. The SCE supported CIHR in its agreement to adhere to the Alliance’s Framework, and CIHR has since become an organizational member of that international group.
In January 2015, the SCE approved CIHR’s Ethics Action Plan. The objectives of the Action Plan are to strengthen ethics leadership and impact in meeting CIHR’s mandate, and systematically embed ethics consideration of ethical issues, and application of ethical principles into CIHR’s business. The Ethics Action Plan has six areas of action:
- Strengthen ethics leadership through shared accountability mechanisms and integration of CIHR’s ethics mandate.
- Ensure ethics considerations inform CIHR decisions related to priority-setting, programs, policies, processes, partnerships and peer review.
- Nurture and monitor ethics research capacity in Canada.
- Capture and assess the impact of ethics activities within the Open Programs and strategic initiatives.
- Develop and implement a new ethics communications strategy.
- Review the ethics leadership model and action plan after five years.
Aligned with the Ethics Action Plan, SCE’s mandate includes providing advice and recommendations to Governing Council and Science Council regarding considerations of ethics in priority setting, programs, policies, processes and partnerships; cultivating research capacity and research needs for ethics in high priority areas for CIHR; and embedding ethics in CIHR’s large scale initiatives. To cite one example in this regard, i.e., research capacity in ethics, the SCE has advised CIHR to prioritize two areas: a) training and career development in ethics; and b) promotion of ethics research.
To systematically and transparently measure the impact of CIHR’s activities against the objectives set out in the Ethics Action Plan, the SCE endorsed an Ethics Performance Measurement Strategy in September 2015, which was approved unchanged by CIHR’s Evaluation Committee. This Strategy contains a conceptual model of activities, outputs and outcomes – along with performance measures – aimed at two ultimate goals: a strengthened culture of research ethics in Canada; and ethics research that informs decision-making and practices in health and health research. In the short to medium term, progress toward a strengthened culture of research ethics will be measured through efforts to strengthen both accountability for ethics within CIHR and ethics leadership at a national level. Progress toward impactful ethics research will be measured through evidence of a strengthened ethics research community in Canada and an expanded ethics knowledge base. For example, CIHR will be systematically tracking: the number of ethics issues addressed by the SCE that become action items for CIHR; the percentage of CIHR governance and advisory committees that include ethics stakeholders; the inclusion of ethics in the design of CIHR’s funding opportunities; the level of CIHR investments in ethics research; and outcomes of funded ethics projects. CIHR’s progress reports will be reviewed by the SCE annually, starting in fall 2016. The Ethics Action Plan and the Ethics Performance Measurement Strategy are available on the CIHR website.
Important new initiatives are ahead in 2016. The SCE will be advising CIHR on the development of ethics guidance for situations in which patients, caregivers and non-patient volunteers actively collaborate in the review, design and conduct of research, and the dissemination of new research knowledge. The evolving and promising science of gene editing, including ethical controversies around human germline editing, will be another focus for the coming year. I look forward to reporting on these and other activities in my next communication.
I would like to thank the members of the SCE for their commitment and achievements thus far and invite you to engage with them or CIHR should you have comments or feedback.
Jane E. Aubin, Ph.D.
Chief Scientific Officer and Vice-President, Research, Knowledge Translation and Ethics
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