Advisory Committee on Ethical, Legal, and Social Issues for the Canadian Longitudinal Study on Aging
Terms of Reference
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 CLSA Scientific Management Team on actions and best practices to address ethical, legal and social issues in carrying out the approved CLSA protocol;
- contribute to the advancement of ELSI knowledge related to the CLSA and similar CIHR-funded, population-based, longitudinal studies, databases and biobanks, including but not limited to the Canadian Consortium on Neurodegeneration in Aging (CCNA); and
- facilitate dissemination of ELSI knowledge to the external community of relevant stakeholders and other cohorts.
The CLSA is a 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
- 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 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 to other CIHR-funded initiatives including but not limited to the CCNA;
- Establish objectives, workplans, timelines and expected outcomes of the committee;
- 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 main issues and outcomes of the Committee's meetings for dissemination to the CCNA and other CIHR-funded initiatives, as appropriate;
- Lead and participate in regular engagement activities with other cohorts at least once annually.
Members of the Advisory Committee on ELSI for the CLSA are appointed and renewed by CIHR in consultation with current and former 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 ten 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 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 occur at least twice a year with one meeting being face-to-face. Additional teleconference meetings are called by the Co-chairs as required.
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 CLSA Investigators, as appropriate. The committee's conflict of interest, confidentiality and privacy process meets the standards under the Conflict of Interest and Confidentiality Policy of the Federal Research Funding Organizations(CICP).
CIHR resources this committee with a Senior Ethics Policy Advisor and an Initiatives Officer.
CIHR will incur all expenses related to the conduct of ELSI Committee meetings. Any specific ELSI-related work requiring financial support must be pre-approved by CIHR.
CIHR’s support of the ELSI Committee will be reviewed as part of its annual program planning and budgetary activities.
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.
Revised: February 2015
- Anne-Marie Tassé (co-chair), Executive Director, P3G (Public Population Project in Genomics and Society), Quebec
- Sean Murray (co-chair), Director of Research and Quality Assurance, Office of the Information and Privacy Commissioner of Newfoundland and Labrador
- Odie Geiger, Public member, British Columbia
- Fred Hill, CLSA Participant, Nova Scotia
- Marleen Van Laethem, Clinical Ethicist, St. Joseph's Health Care London, Ontario
- Kiran Pohar Manhas, CIHR-Alberta Health Services (AHS) Health System Impact Fellow, AHS and the Integrative Health Institute, University of Alberta
- Maxwell Smith, Co-Director, Health Ethics, Law, & Policy (HELP) Lab, and Assistant Professor, School of Health Studies, Western University
|Anne-Marie Tassé (Co-chair)||Anne-Marie Tassé (LL.B., LL.M., M.A., LL.D.) is a lawyer specialised in health law and bioethics. She holds Master's degrees in Health Law (Université de Sherbrooke), and in Bioethics (Université de Montréal), a Certificate in Health and Social Services Management (Université du Québec), and a Doctorate in Law (Université de Montréal). Her work looks primarily at interactions between law and ethics, in the areas of international biomedical and genetic research. Specialised in international comparative law, she is the Executive Director of P3G (Public Population Project in Genomics and Society) and an Academic Associate at the Center of Genomics and Policy (McGill University). As such, she coordinates the legal and ethical aspects of more than 10 Canadian and international research projects. Author of more than 40 books, book chapters, peer-reviewed articles, policies and guidelines, her work is presented in Canada and abroad. She is also the Chair of research ethics boards and a lecturer in medicine and genetic counselling (Université de Montréal)|
|Sean Murray (Co-chair)||Sean Murray is Director of Research and Quality Assurance for the Office of the Information & Privacy Commissioner of Newfoundland & Labrador (OIPC). He holds undergraduate degrees from Acadia University and Memorial University, as well as a Master of Philosophy in the Humanities from Memorial. He worked in education and the non-profit sector for several years prior to 1999 when he became an Investigator with the Newfoundland & Labrador Human Rights Commission. He joined the OIPC shortly after it was established in early 2005, where he has served in several capacities, including his present role. Sean has represented the OIPC on the government’s Personal Health Information Act (PHIA) Advisory Committee since its passage into law in 2008 through proclamation in 2011 and subsequently. He also represents the OIPC on the Canada Health Infoway Privacy Forum and led the OIPC’s contribution to the 2014 Access to Information & Protection of Privacy Act review process, which has resulted in the enactment of one of the best public sector access and privacy statutes in the world.|
|Odie Geiger||Odie Geiger has held positions as Manager of Research and Science for the Heart and Stroke Foundation of BC & Yukon, as Research Advisor for the Alzheimer Society of BC, and as a Research Officer for the Department of Medicine and Research of Riverview Hospital in BC. In addition, she has experience as a Teaching Assistant in the Departments of Psychology and English at the University of British Columbia (UBC), and as a Psychology Laboratory Instructor and Manager of the Psychophysics Laboratory at UBC. Since her retirement, she has participated on grant application review committees for the Heart and Stroke Foundation (HSF), the Canadian Institutes of Health Research (CIHR), and Canada’s Strategy for Patient Oriented Research (SPOR).|
|Fred Hill||Fred Hill is a research participant in the CLSA. He lives in Eastern Passage, Nova Scotia.|
|Marleen Van Laethem||Marleen Van Laethem is the Clinical Ethicist at St Joseph’s Health Care London. With the breadth of programs at St. Joseph’s, Marleen provides ethics consultation service to mental health (including forensic mental health), short-stay surgery and ambulatory care, rehabilitation for spinal cord injury, stroke, acquired brain injury, as well as a Long-Term Care home. Organizational ethics issues are also included. She’s been working in ethics for 17 years, previously at Toronto Rehabilitation Institute and prior to that, at St. Michael’s Hospital, Toronto. Marleen’s Master of Health Science degree is in Bioethics from University of Toronto. Her Bachelor of Science degree is in Biology, from McMaster University.|
|Kiran Pohar Manhas||Kiran Pohar Manhas is a CIHR-AHS Health System Impact Fellow with Alberta Health Services and the Integrative Health Institute, University of Alberta. She holds degrees in pharmacy (University of British Columbia) and law (University of Victoria), as well as an MSc in Health Research Methodology (McMaster University) and a PhD in Biomedical Ethics (University of Calgary). Kiran’s research interests focus on bridging health law and policy analysis with stakeholder engagement to inform policy planning and evaluation in health systems. Prior to this Health System Impact Fellowship, Kiran completed a 3-year postdoctoral fellowship with PolicyWise for Children and Families wherein she led a comprehensive, mixed-methods research strategy on stakeholder engagement and policy planning and analysis around the governance of secondary data use, and the development of best practices for an emergent data repository of research and nonprofit data. Her current fellowship research explores the implementation experiences of a provincial health system change and its impact on shared decision-making. Kiran has secured provincial and national competitive external grants and awards, and has presented her research locally, nationally and internationally.|
|Maxwell J. Smith||Maxwell J. Smith, PhD, MSc, is an Assistant Professor at Western University in the School of Health Studies, Faculty of Health Sciences. At Western, Max is also an Associate Faculty Member in the Rotman Institute of Philosophy and Co-Director of the Health Ethics, Law, and Policy (HELP) Lab. In addition to his academic roles at Western, Max is a Consulting Bioethicist at Sunnybrook Health Sciences Centre. He completed a PhD in public health sciences and bioethics at the University of Toronto, an MSc in bioethics at Union Graduate College and the Icahn School of Medicine at Mount Sinai, and an Honours BA in bioethics at the University of Toronto. His research bridges scholarship in moral and political philosophy with social science methods to investigate the meaning, role, and instantiation of declared values in public health, including ‘social justice’ and ‘health equity’.|
Ex officio Members:
- Sheila Chapman, CIHR Ethics Office
- Susan Kirkland, CLSA Co-Principal Investigator
- Patricia Kosseim, Office of the Privacy Commissioner of Canada (Co-Chair) (term: September 2009 – September 2010)
- Kristiann Allen, CIHR Ethics Office (ex officio) (term: September 2009 – September 2010)
- Linda Mealing, CIHR, CLSA (ex officio) (term: September 2009 – March 2011)
- Nola Ries, University of Alberta (term: September 2009 – Dec 2010)
- Jill Scott, LLB, LLM, Barrister & Solicitor (term: September 2009 – May 2011)
- Christina Wolfson, CLSA Co-Principal Investigator (ex officio) (term: September 2009 – Oct 2010)
- Carman Baggaley, Office of the Privacy Commissioner of Canada (term: September 2009 – September 2012)
- Khaled El Emam, CHEO Research Institute (term: September 2009 – September 2012)
- Trudo Lemmens, University of Toronto (term: September 2009 – September 2012)
- Don Willison, Ontario Agency of Health Protection and Promotion (term: September 2009 – September 2012)
- Daryl Pullman, Memorial University of Newfoundland (term: September 2009 – September 2013)
- Anita Ho, University of British Columbia (term: September 2012 – August 2014)
- Kieran O’Doherty, University of Guelph (term: July 2009 – December 2015)
- Mylène Deschênes, Fonds de Recherche du Québec (term: July 2009 – December 2015)
- Debra Grant, Office of the Information and Privacy Commissioner of Ontario (term: August 2009 – December 2015)
- Barbara Russell, University Health Network and Women’s College Hospital (September 2012 – December 2015)
- Fern Brunger, Memorial University (term: January 2016- December 2018)
- Norman O'Donnell, Community Member (term: July 2010- December 2017)
- Claudia Emerson, McMaster University (term: September 2012 - December 2018)
- Jacob Shelley, University of Western Ontario (term: September 2012 - December 2018)
- Michael Burgess, University of British Columbia Co-chair (term: January 2015 – December 2017)
- Elaine Gibson, Dalhousie University Co-chair (term: September 2012- December 2018)
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