Update from the CIHR Standing Committee on Ethics
Milestone in reporting on ethics

(2016-12-22) The Standing Committee on Ethics (SCE) has been hard at work since my last update as CIHR's Vice-President of Research, Knowledge Translation and Ethics in March 2016. I am pleased to provide you with highlights of recent activities and achievements.

An important milestone for ethics at CIHR has been reached with the release of CIHR's Ethics Performance Measurement Annual Report 2015-2016. It is framed by the Ethics Action Plan, and uses the indicators and metrics set out in the Ethics Performance Measurement Strategy. The report provides data on these metrics and a baseline against which we will be able to measure our progress year by year towards enhancing ethics research and the integration and consideration of ethics at all levels within CIHR. I present you with this report to demonstrate CIHR's commitment to transparency, and I invite your suggestions and comments on how to improve not only CIHR's performance but also its reporting (e.g., by email, in conversation with a Member of the SCE, or via the Ethics Office).

In the meantime, as we continue to collect data on CIHR's investments in ethics research in Canada, we would like to congratulate the successful grantees from the March 2016 Catalyst Grant in Ethics competition, and announce that the funding opportunity is being re-launched. If you have not done so already, consider subscribing to the health ethics funding opportunity bulletins for regular updates on funding opportunities that may be a source of support for your research.

Since March 2016, the SCE has met four times and discussed many important issues, such as the CIHR Reforms and the outcomes of the July 2016 Summit (Working Meeting to discuss CIHR's peer review processes); disruptive technologies, including new emerging methodologies for gene editing; sex and gender considerations in health research; and the ethics of patient engagement.

On gene editing, members of the SCE collaborated with CIHR leaders and staff in the production of Human Germline Gene Editing: Points to Consider, from a Canadian Perspective, which outlines considerations about human germline gene editing and the applications of gene editing technologies in human embryos in the Canadian context. These Points to Consider are designed to inform future discussions in this area for research, teaching, and outreach and are being shared with the appropriate national and international governmental and research bodies to inform their decision-making processes. To obtain a copy of the Points to Consider, please contact ethics-ethique@cihr-irsc.gc.ca.

Furthermore, strengthened communications and interactions with internal and external stakeholders remain goals of CIHR's Ethics Action Plan. For example, during National Health Ethics Week in April, CIHR hosted internal promotional events to increase staff and Institute awareness of CIHR's role in promoting and supporting research in ethics, and the ongoing work of the SCE. Exchanges on ethics matters and activities with Health Canada, the Public Health Agency of Canada (PHAC) and Genome Canada have increased in frequency via both participation in SCE and regular input and exchanges in other meetings, workshops and conferences.

Members of the SCE had the opportunity to present on CIHR's activities at the June 2016 Annual Conference of the Canadian Bioethics Society (CBS), and had an excellent exchange with CBS members on the work of the SCE.

Members of the SCE also collaborated with CIHR leaders and staff in a session at the Canadian Association of Research Ethics Boards (CAREB) 2016 National Conference on the ethics of patient engagement. A working group comprising members bringing the patient perspective, as well as the research and research ethics perspectives, has been convened and will advise CIHR on the development of ethics guidance with respect to the meaningful engagement of patients as active collaborators in research, with the aim of presenting an initial draft for consultation in spring 2017.

In the year to come, the SCE will continue to monitor, identify and address emerging ethical issues of strategic relevance to CIHR's mandate in health and health research, and for this ongoing commitment and hard work I thank them. 

Let me also thank all of you for your interest and input, and I look forward to hearing from you with ideas and suggestions.

Jane E. Aubin, Ph.D.
Chief Scientific Officer and Vice-President, Research, Knowledge Translation and Ethics

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