Highlights of Minutes - November 11, 2009
Advisory Committee on Ethical, Legal and Social Issues (ELSI) for the Canadian Longitudinal Study on Aging (CLSA)
Second Meeting - Teleconference
2:30 p.m. – 4:30 p.m. EST, Wednesday, November 11, 2009
Highlights Of Minutes
NOTE: Committee members participate in their personal capacity and work collectively to achieve committee goals rather than act as representatives of any group or interest.
Members:
Patricia Kosseim, Genome Canada (Co-Chair)
Daryl Pullman, Memorial University of Newfoundland (Co-Chair)
Mylène Deschênes, Public Population Project in Genomics Canada
Khaled El Emam, CHEO Research Institute
Debra Grant, Information and Privacy Commissioner of Ontario
Kieran O'Doherty, University of British Columbia
Nola Ries, University of Alberta
Jill Scott, Vancouver Coastal Health Authority
Don Willison, Ontario Agency of Health Protection and Promotion
Ex officio members:
Kristiann Allen, CIHR Ethics Office
Linda Mealing, CIHR, CLSA
Christina Wolfson, CLSA Co-Principal Investigator, McGill University
Regrets:
Carman Baggaley, Office of the Privacy Commissioner of Canada
Trudo Lemmens, University of Toronto
Guests:
Erica Dobson, CIHR, CLSA
Paddi O'Hara, O'Hara Consulting, CIHR
SUMMARY: The primary purpose of this meeting was to discuss the draft documents that will guide the functioning of this Committee, that is: Terms of Reference, Publication Policy and Conflict of Interest Policy. The plan to identify a Community Member, as well as the CLSA workplan, was also discussed.
Terms of reference
1. A revised draft of the Committee Terms of Reference was discussed and changes were suggested in order to clarify the mandate and responsibilities of this group. It was agreed that the Terms of Reference need to be reviewed and updated on a regular basis. The Committee Terms of Reference were considered approved with these changes.
Community member representation
2. It was decided that the B.C. Biolibrary group1 would be approached in order to find a Community Member for the Committee who might have some knowledge of the issues involved but would not represent a particular interest group. A second community member may be recruited in the future, if deemed necessary.
Publication policy
3. Discussion regarding the Publication Policy was carried forward from the last meeting. Changes were suggested in order to clarify what is covered, to whom it applies and details regarding the processes for confidentiality and disclosure. The Publication Policy was not considered approved at this time; however, a revised version is to be circulated electronically for review and approval.
Conflict of interest management process
4. Discussion regarding the Conflict of Interest Policy was carried forward from the last meeting. The Committee discussed the policy and suggested some changes in order to link this document with the Confidentiality Policy and provide greater clarity with respect to definitions and processes. The Conflict of Interest Policy was considered approved with these changes.
CLSA ELSI Workplan for Committee (Update)
5. The Committee was updated on the work done by the CLSA team in order to identify realistic timelines for the CLSA ELSI activities as they impact the Committee. It was agreed that the CLSA should provide the Committee with all relevant documentation, as well as prioritize the tasks that will be presented to the Committee, as the study unfolds.
1.The BC Biolibrary was part of a deliberative public engagement early in 2009 that aimed to involve a diverse cross-section of the BC public directly in the design of the BC BioLibrary policy, notably processes for obtaining informed consent and for the governance of donated samples and information.