Advisory Committee on Ethics – Terms of Reference

Mandate

The mandate of the CIHR external Advisory Committee on Ethics (ACE) is to provide the Vice-President, Research – Learning Health Systems (VPR-LHS) with guidance to support CIHR’s commitment to ethics in health research and health research ethics. The Committee will provide agency-wide advice on the ethical dimensions of CIHR's mandate as set out in the CIHR Act, in collaboration with CIHR’s Ethics Office.

The committee’s mandate includes:

• Providing advice on ethics priorities related to health research^{Footnote 1} and related research practices.
• Providing strategic guidance to support CIHR’s commitment to systematically embed the consideration of ethics issues – and the application of ethics principles – into CIHR’s business, including the integration of ethics considerations across Strategic Plan priorities.
• Identifying emerging and re-emerging ethics issues in health research in Canadian and global contexts, inform CIHR about their significance, and recommend/suggest pathways forward.

The committee will not provide ethics advice related to human and financial resource management, or ethics issues in stem cell research.

Membership

• Members are appointed by the VPR-LHS, based on their complementary skills, knowledge, roles relevant to ethics in health research and health research ethics, and diversity of lived experience.
• The committee consists of up to 14 members (including a minimum of one member who self-identifies as Indigenous), including:
  • 2 co-chairs: the Associate Vice President, Research - Strategy, and a member of ACE that is not a CIHR employee who will serve for a maximum one three-year term.
  • Up to 9 external ethics experts from diverse specialties and career stages within the field of applied and health ethics
  • 2 patient and public/community representatives
  • 2 CIHR Senior Ethics Advisors^{Footnote 2}.
• External stakeholders and subject matter experts may be invited to join ad hoc sub-working group(s), to address specific issues or support the committee when appropriate.
• CIHR is committed to the values and principles of equity, diversity, and inclusion across all aspects of its business. The composition of ACE will reflect CIHR’s commitment to equity by ensuring that membership of the committee has diverse representation to include Indigenous Peoples, racialized persons, women, persons living with disabilities, 2SLGBTQAI+ people, diverse regions of Canada, and Anglophone and Francophone representation, among others. CIHR understands that social identities are intersectional, and that each person brings their own lived experience to the committee’s work.

Observers

• Standing observers will include:
  • 1 CIHR Scientific Director
  • Director General, Science Policy Branch
  • Deputy Director, Research Excellence and Ethics
  • Executive Director, Secretariat on Responsible Conduct of Research
• Other CIHR staff with a tangible work requirement that aligns with a specific item may attend meetings with approval from the co-chairs.

Membership terms

• All members will be appointed to serve for a term of three years, renewable for a second term of up to three years. Members can be appointed for no more than two consecutive terms.

Roles and Responsibilities

Roles and Responsibilities of the Co-Chairs

• Inform and approve the agendas for Committee meetings.
• Manage proceedings and keep meetings focused.
• Ensure the meeting space remains open to discussion and manage conflicts swiftly and effectively.
• Approve invitation of ad hoc participants and presenters, as required.
• Maintain communications with the committee outside of scheduled meetings.
• Endorse proposed topics for deliberation by the committee, prior to approval by the VPR-LHS
• Report to the VPR-LHS and other CIHR internal governance committees on the activities of ACE, as required.

Roles and Responsibilities of Members

• Review materials in advance and participate actively in meetings.
• Carry out assigned actions set by the committee.
• Provide input into materials via email between meetings, as required.
• Abide by principles of helping to create and maintain a safe space for committee discussions

Roles and Responsibilities of Members from the CIHR Ethics Office

• Lead, in consultation with ACE Members, coordination of a multi-year, iterative list of priority issues for ACE to address.
• Serve as a central point of contact for coordinating communications between ACE, the VPR-LHS and other areas of the agency as needed, including sharing of advice from the committee.

Ethics Advice Process

Requests for ethics advice from across CIHR - or emerging/re-emerging ethics issues in health as identified by ACE members - are received by the Ethics Office and reviewed for alignment with the mandate of ACE. Requests identified as beneficial for consideration by ACE are shared with ACE co-chairs for endorsement and the VPR-LHS for approval to proceed. The Ethics Office then extends approved requests to ACE to action. Once the committee's analysis or advice is complete, the Ethics Office seeks VPR-LHS approval of content and route the response to the requestor. Advice on questions emanating from ACE are reserved by the VPR-LHS for consideration and possible action.

Meetings

The committee will meet at least three times per year. One meeting per year will be in-person/hybrid (as funding allows), while the other meetings will be held virtually. Ad-hoc meetings may be called by the co-chairs in response to emerging or timely issues related to the mandate of the ACE. Members will be invited to attend sub-committee meetings, as required.

Quorum

Matters being discussed will be settled by broad consensus. Where consensus is not feasible, the breadth of varying opinions will be shared with the VPR-LHS for review or decision.

Resolution of Persistent Disagreement

If a persistent disagreement arises during the Ethics Advice Process, the members shall identify the points of disagreement, seek to understand underlying concerns, explore possible solutions, and seek an agreement or compromise. The members shall demonstrate mutual respect, uphold ethical principles, and strive to address the ethical concerns of all parties involved.

Transparency of ACE Advice

Transparency is a fundamental principle of the ACE advice process. ACE advice is provided in an open, transparent, and impartial manner, based on the best available evidence and ethical principles. To ensure transparency, the Ethics Office will document the advice process, including the sources of information considered, the ethical principles applied, and the reasoning behind the advice given. Members shall disclose any conflicts of interest or potential biases that could affect the impartiality of the advice. This commitment to transparency ensures that the ACE advice process is accountable, credible, and trustworthy. The membership and Terms of Reference of ACE will be made publicly accessible on CIHR’s website, as well as high-level summaries of meetings and reports.

Authority and Governance

ACE is under the authority of the VPR-LHS. The VPR-LHS will provide an executive response to the committee regarding the uptake of the recommendations offered, when appropriate.

Evaluation

These Terms of Reference will be reviewed by the VPR-LHS in close consultation with ACE members after one year of the committee’s commencement, and thereafter on a bi-annual basis.

Official Languages

All members will be encouraged to participate in the meetings in the official language of their choice. Meeting agendas will be produced in both English and French. Formal advice resulting from ACE discussions will be made available in both official languages, upon request.

Code of Conduct

Meetings will be conducted in accordance with the CIHR Code of Conduct.

Confidentiality

All members must adhere to the following requirements:

1. Committee deliberations are confidential, meaning that the committee members should not discuss or in any other way divulge to third persons comments made during meetings and committee’s advice to CIHR until such a time when CIHR makes that information public.
2. Members should also protect the confidence of the information contained in documentation they receive from CIHR, and not use it for their own benefit or for the benefit of others.
3. All enquiries or representations received by the committee members about the work of the committee must be referred to CIHR.

Conflict of Interest Prevention and Management

In accordance with the CIHR Policy on Conflict of Interest Prevention and Management for Scientific Directors, Members of Governing Council and Advisory Bodies, committee members have a duty to bring an independent judgment to bear on all CIHR issues they are asked to consider and therefore, to avoid situations where their personal interests may prevent them from discharging this duty with integrity.

To minimize the risk of COI:

• All committee members should proactively declare their relevant external interests during meetings, and collaborate in the resolution of potential conflict of interest situations in the interests of CIHR and for the public good.
• Committee members external to CIHR should complete the Declaration of External Interests Format the beginning of their term and annually thereafter.
• As public service employees, CIHR staff committee members should be familiar with Requirements for Preventing and Dealing with Conflict of Interest Situations.

When in doubt about the required disclosure, committee members should seek advice of the committee co-Chairs. The co-Chairs and the members have full support of the COI Officer for the COI related advice and assistance via Declaration@cihr-irsc.gc.ca.

Compensation

Compensation may be available for patient and public/community representatives; an agency-wide approach for compensating for lived/living experience is under development.

Secretarial Support

Secretarial support will be provided by the Science Policy Branch.

Terms of Reference

Ratified February 2024

Date modified:

2024-03-19