Advisory Committee on Ethical, Legal, and Social Issues for the Canadian Longitudinal Study on Aging
Terms of Reference
Mandate
The mandate of the Canadian Institutes of Health Research (CIHR) Advisory Committee on Ethical, Legal and Social Issues (ELSI) for the Canadian Longitudinal Study on Aging (CLSA) is to:
- provide independent, critical advice to the Scientific Management Team leading the CLSA on actions and best practices to address ethical, legal and social issues during the five-year implementation phase of the CLSA;
- contribute to the advancement of ELSI knowledge related to the CLSA and similar CIHR-funded, population-based, longitudinal studies, databases and biobanks; and
- disseminate ELSI knowledge to the external community of relevant stakeholders.
Authority
The CLSA is a Large Strategic Initiative of CIHR. The Advisory Committee on ELSI for the CLSA is established under the authority of CIHR as part of a broader governance structure established to uphold the accountability, transparency and integrity of the CLSA and build and maintain public trust therein. The CLSA Advisory Committee on ELSI is not intended to act in a peer review capacity.
The Advisory Committee on ELSI for the CLSA is intended to work closely with CIHR's Ethics Office and operate in the way it deems will most effectively achieve its mandate. To this end, it has the authority to:
- hold meetings and invite participation of external experts as necessary
- create working groups
- commission background papers or reports to assist the work of the committee
- liaise with other relevant external stakeholders (including, e.g., Research Ethics Boards and other cohort studies)
- publish papers related to the committee's work, in accordance with applicable policies on confidentiality, conflict of interest and publication;
- periodically review the relevance of its terms of reference and composition.
Roles and Responsibilities
Members participate in their personal capacity and work collectively to achieve committee goals rather than act as representatives of any group or interest.
The roles and responsibilities of the Advisory Committee on ELSI for the CLSA are to:
- Identify, anticipate and be responsive to ethical, legal and social issues that may arise in the design and implementation of the CLSA;
- Make recommendations to the CLSA Scientific Management Team, the principal decision making body of the CLSA, on how to practically address these issues;
- Contribute to, and/or guide, the development of new or revised policies, procedures or research on ethical, legal and social issues relevant to the CLSA and other similar publically-funded, population-based, longitudinal studies, databases and biobanks;
- Develop effective communication strategies to disseminate ELSI knowledge relevant to the CLSA as appropriate;
- Establish objectives, workplans, timelines and expected outcomes of the committee and make recommendations to the CIHR Ethics Office on the coordination, activities and resources necessary to support the committee's work;
- Communicate annually to CIHR, through its Ethics Office, on the recommendations, deliverables and outcomes of the Committee's work;
- Provide a plain language, executive summary of the minutes of the Committee's meetings in both official languages for public posting on CIHR's website;
Chair, Membership
Members of the Advisory Committee on ELSI for the CLSA are appointed and renewed by CIHR in consultation with current and former existing committee members, Senior CIHR staff and, if required, other relevant stakeholders. Members are sought from various relevant sectors, professions and the lay community.
Core membership includes up to twelve appointed members.
The Committee is chaired or co-chaired by one or two core members of the committee.
A senior staff member from the CIHR Ethics Office and a named representative from the CLSA Scientific Management Team are ex officio members. Ex officio members have the right to participate in discussions, but do not have the right to make formal motions or vote.
Representatives from other CIHR portfolios (CIHR Staff) and/or from other agencies may be invited as guests to actively participate in, or to observe, discussions. Guests may participate in discussions but only for particular purposes and do not have any member status.
CIHR Staff may also be present in support of the work of the committee and do not have member status.
Terms of Appointments
Members are invited to serve initial terms of up to three years and may be re-appointed for a second term of up to three years, for a maximum of six consecutive years of service. In order to maintain continuity, terms are staggered so that no more than one-third of members may be considered for replacement or re-appointment each year.
Decisions
Decisions and recommendations of the Advisory Committee on ELSI for the CLSA are made by consensus whenever possible and without a formal vote. If consensus is not possible, a decision is made by majority vote (50% plus 1) with the Co-Chairs and ex officio members not voting. Chairs may vote in the case of a tie.
When quorum (50% plus 1) is not met, voting does not occur. Ex officio members, CIHR Staff or Guests are not counted for quorum.
Minority perspectives, where applicable, are accurately documented.
Meetings
Meetings occur at least twice a year with at least one meeting being face-to-face. Additional teleconference meetings are called by the Co-chairs as required.
Evaluation
The terms of reference of the Advisory Committee on ELSI for the CLSA are reviewed every year by CIHR and the Committee to ensure their ongoing relevance to the CLSA and the evolving research landscape.
Conflict of Interest, Confidentiality and Privacy
Members of the Advisory Committee on ELSI for the CLSA must disclose any actual or potential conflict of interest and respect the confidentiality of Study Investigators, as appropriate. The committee's conflict of interest, confidentiality and privacy process meets the standards under the CIHR Policy on Conflict of Interest and Confidentiality in the context of Merit, Relevance and Peer Review (CCIP).
CIHR Resources
CIHR resources this committee with a Senior Ethics Policy Advisor and a Project Officer.
The CIHR Office for the Canadian Longitudinal Study on Aging incurs all expenses related to the conduct of effective meetings and to committee requirements for accomplishing its work, including, but not limited to, consultations and content development (including commissioned reports).
Service as a committee member is voluntary. Committee members are reimbursed for expenses incurred to attend meetings but do not receive honoraria or other financial compensation for their contribution of expertise and time.
Ratified on November 11, 2009.
Highlights of Minutes
2009-11-11
2009-12-14
2010-02-19
2010-03-11
2010-04-09
2010-05-28
2010-06-21
2010-09-28
Membership
Members:
Kieran O'Doherty, University of Guelph (Co-Chair)
Daryl Pullman, Memorial University of Newfoundland (Co-Chair)
Mylène Deschênes, Public Population Project in Genomics Canada
Debra Grant, Information and Privacy Commissioner of Ontario
Norman O'Donnell, Community Representative
Claudia Emerson, McMaster University
Elaine Gibson, Dalhousie University
Anita Ho, University of British Columbia
Jacob Shelley, University of Toronto
Barbara Russell, Centre for Addiction and Mental Health
Ex officio Members:
Sheila Chapman, CIHR Ethics Office
Susan Kirkland, CLSA Co-Principal Investigator
Former Members:
Patricia Kosseim, Office of the Privacy Commissioner of Canada (Co-Chair) (term: Sept 2009 - Sept 2010)
Kristiann Allen, CIHR Ethics Office (ex officio) (term: Sept 2009 - Sept 2010)
Linda Mealing, CIHR, CLSA (ex officio) (term: Sept 2009 - March 2011)
Nola Ries, University of Alberta (term: Sept 2009 - Dec 2010)
Jill Scott, LLB, LLM, Barrister & Solicitor (term: Sept. 2009 - May 2011)
Christina Wolfson, CLSA Co-Principal Investigator (ex officio) (term: Sept 2009 - Oct 2010)
Carman Baggaley, Office of the Privacy Commissioner of Canada (term: Sept. 2009 – Sept. 2012)
Khaled El Emam, CHEO Research Institute (term: Sept. 2009 – Sept. 2012)
Trudo Lemmens, University of Toronto (term: Sept. 2009 – Sept. 2012)
Don Willison, Ontario Agency of Health Protection and Promotion (term: Sept. 2009 – Sept. 2012)