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
Elaine Gibson, Dalhousie University (Co-Chair)
Michael Burgess, University of British Columbia (Co-Chair)
Fern Brunger, Memorial University
Claudia Emerson, McMaster University
Sean Murray, Office of the Information and Privacy Commissioner of Newfoundland and Labrador
Norman O'Donnell, Community Member
Jacob Shelley, University of Western Ontario
Anne-Marie Tassé, Executive Director, P3G (Public Population Project in Genomics and Society)
|Elaine Gibson is Associate Professor at the Schulich School of Law and former Associate Director of the Health Law Institute at Dalhousie University. Her areas of expertise include health law, public health, medical malpractice, privacy law, patient safety, and torts. Elaine participates in a number of research projects concerning the privacy and confidentiality of health information. Recent publications include “Public Health Information Privacy and Confidentiality”, in N. Ries, T. Bailey and T. Caulfield, eds., Public Health Law and Policy in Canada, 3rd ed. (Toronto: Lexis-Nexis, 2013), 131; "Health Information: Confidentiality and Access" in J. Downie, T. Caulfield, and C. Flood, eds., Canadian Health Law and Policy, 4th ed. (Toronto: Lexis-Nexis, 2011) 253; “A Roadmap to Research Uses of Electronic Health Information” in C.M. Flood, ed., Data Data Everywhere: Access and Accountability? (Montreal and Kingston: McGill-Queen’s University Press, 2011) 233 (with D. Willison and K. McGrail); "Privacy and Confidentiality" in T. Bailey and N. Ries, eds., "Halsbury's Laws of Canada, Public Health Volume", 1st ed. (Toronto: Lexis-Nexis, 2010); and “Privacy and Confidentiality Issues for Dental Professionals” in J. Downie et al., eds., Dental Law in Canada, 2nd ed. (Toronto: Lexis-Nexis, 2010) 269.|
Michael M. Burgess is Professor and research Chair in Biomedical Ethics at the W. Maurice Young Centre for Applied Ethics, School of Population and Public Health and with an appointment in the Department of Medical Genetics at the University of British Columbia. Burgess works from the Okanagan campus of UBC in the Southern Medical Program to help facilitate interdisciplinary research and learning collaborations between the Kelowna and Vancouver campuses.Burgess’s recent research has been on health, science and technology policy and the development of a model for public engagement based on theories of deliberative democracy. The model has been extended through events in BC, Montreal, at the Mayo Clinic (Minnesota), California, Western Australia and Tasmania. The most common topic has been biobanks and epidemiology, but other topics include policy issues in salmon genomics, environmental remediation and biofuels and more recently funding priorities for expensive drugs for cancer and rare diseases. Funders include Genome Canada, Genome BC, CIHR, SSHRC, NIH, the Australian Research Council and National Health and Medical Research Council. This work has been published in books and journals including Biopreservation and Biobanking; Genomics, Society and Medicine; the Journal of Personalized Medicine; the Journal of Public Deliberation; Public Health Genomics; Public Understanding of Science; Research Ethics, Sage Open; and Social Science and Medicine.
|Fern Brunger||Fern Brunger is Associate Professor of Health Care Ethics in the Faculty of Medicine at Memorial University. She holds a clinical ethics position with the Provincial Health Ethics Network of Newfoundland and Labrador (PHENNL) and is a Chair of the Newfoundland and Labrador Health Research Ethics Board (NL HREB). She is a medical anthropologist and ethicist whose research interests are at the interface of bioethics and anthropology. Her areas of specialization include cross-cultural clinical ethics and the ethics of health research involving socially identifiable populations. She focuses on culture in its relation to power. Dr. Brunger was a member of the board of the National Council for Ethics of Health Research (NCEHR) and has contributed to various national working groups and policy statements on research ethics, including CIHR’s Privacy Best Practices (2005) and CIHR’s Guidelines for Health Research involving Aboriginal Peoples (2006). She is a member of Memorial University’s Bioethics Group, teaching ethics in undergraduate and postgraduate medicine and in the Master of Health Ethics program as well as providing graduate supervision and education in the Division of Community Health and Humanities.|
|Claudia Emerson||Claudia Emerson is Principal at the Centre for Ethical, Social, and Cultural Risk (CESCR) and Scientist in the Centre for Research on Inner City Health (CRICH) in the Li Ka Shing Knowledge Institute of St. Michael’s Hospital, Toronto, and is appointed Adjunct Assistant Professor of Philosophy at McMaster University. Since 2007, she has been a core investigator and advisor with CESCR (formerly the Ethical, Social, and Cultural Program for Global Health) funded by the Bill & Melinda Gates Foundation, where she conducts research and consultation across the Global Health and Global Development programs of the Foundation. Dr. Emerson specializes in applied ethics, risk analysis, and policy development in global health, public health, and human subject research, with a focus on data use and governance for evidence-informed decision-making. She led the development of the Gates Foundation and Grand Challenges Canada Data Sharing Policy, and currently serves on the Scientific Committee of the World Data System of the International Council for Science, and Data Standards and Integration Working Group for the Critical Path to Tuberculosis Regimens Initiative, Washington, DC. Previously she served on the Ethics Advisory Committee of the Ontario Health Study.|
|Sean Murray||Sean Murray is Assistant Commissioner (Acting) 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.|
Lay member, Kelowna BCNorm O’Donnell is a retired teacher. He served as an Adjunct Professor at the University of British – Okanagan Education Department for five years. Prior to becoming a member of the CSLA ELSI Committee, Norm participated in the public engagement process for the BC Biobank.
|Jacob Shelley||Jacob Shelley is an assistant professor at Western University with a joint appointment with the Faculty of Law and the School of Health Studies in the Faculty of Health Sciences. He also holds a cross appointment to the Schulich Interfaculty Program in Public Health. He is completing his doctorate (SJD) at the University of Toronto, where he was a Vanier Fellow with the Canadian Institutes of Health Research. His doctoral thesis examines the use of private law in obesity prevention, specifically looking at the use of product liability law to require food manufacturers to warn consumers about the dangers inherent in their food products (under the supervision of Trudo Lemmens). Jacob obtained his LLB (2007) and LLM (2009; under supervision of Timothy Caulfield) from the University of Alberta. His LLM thesis looked at the normative legal framework for public health. Jacob also has a Master of Theological Studies from Conrad Grebel University College. His primary area of interest is the proper limits and role of law in promoting public health and preventing chronic disease. In addition, he is generally interested in issues that arise at the interface of law, health science, and ethics.|
|Anne-Marie Tassé||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)|
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)
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