Highlights of Minutes - December 14, 2009
Advisory Committee on Ethical, Legal and Social Issues (ELSI) for the Canadian Longitudinal Study on Aging (CLSA)
Third Meeting: Teleconference
11:00 p.m. – 1:00 p.m. EST, Monday, December 14, 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)
Carman Baggaley, Office of the Privacy Commissioner of Canada
Mylène Deschênes, Public Population Project in Genomics Canada
Khaled El Emam, CHEO Research Institute
Debra Grant, Information and Privacy Commissioner of Ontario
Trudo Lemmens, University of Toronto
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
Guests:
Erica Dobson, CIHR, CLSA
Paddi O'Hara, CIHR Consultant
Jennifer Uniat, Senior Research Associate, McGill University
SUMMARY: The primary purpose of this meeting was to finalize comments and advice regarding the Publication Policy. Plans were also discussed regarding the possibility of collaborating with the Canadian Partnership for Tomorrow Project and the opportunity to offer plenary presentations at three upcoming national ethics conferences.
Committee documents
1. The Committee Terms of Reference and the Conflict of Interest Policy were approved during the last meeting (November 11, 2009) contingent on suggested changes.
2. Discussion regarding the Publication Policy was carried forward from the last meeting to clarify the scope and application of the policy. In particular, the nature of the input to be offered to members publishing on topics related to the mandate of the Committee was addressed. It was suggested that, at minimum, input would be invited on issues of scientific accuracy or process integrity. The wording of this section will be revised and the Policy will be revisited in six months in light of experience gained.
Conflict of interest disclosure
3. There were no conflicts of interest reported.
Publications disclosure
4. There were no publications reported.
Community member
5. During the last meeting, the Committee discussed the need to add a community member to the roster and accordingly, a short list of potential community members who have experience with bio-banking deliberations was drawn from the B.C. Biolibrary Project. A first potential candidate has been contacted and the Committee will be notified when the community role is filled. Consideration will be given in the future to the possibility of recruiting a second community member.
Websites providing information about the committee to the public
6. The CIHR website will provide information about the Committee, and will be updated on a regular basis in order to ensure that there is an appropriate level of transparency and legitimacy to Committee activities.
CLSA Work Plan and Requests for Advice From the Committee
7. Members were provided with an updated CLSA work plan, including the proposed timeline for release of documents to the Committee. All the latest documents associated with the Tracking Protocol arm of the study, including modifications requested by Research Ethics Boards (REBs), have been made available to members. Most of these documents do not require Committee input at this time with the exception of the Data Access Policy. Documents, which will, eventually, be the main focus for input.
8. Members were informed that efforts are underway by the CLSA to plan an REB teleconference with the goal of instituting a more coordinated review process. The REB Chairs have expressed interest in devising a coordinated review process, but the difficulty may lie in the unique application forms used by each institution.
9. There was discussion about the need for clarity regarding the nature of the advice to be requested from the Committee. As much as possible advice could be sought using specific reference questions, while not precluding or limiting members from providing additional input should they identify an important issue.
Collaborative meeting with the canadian partnership for tomorrow project
10. The Committee Co-Chairs described an inaugural joint meeting between the CLSA and the Canadian Partnership for Tomorrow Project (CPTP) that took place in Toronto in November 2009. Although the two cohort studies are different in terms of structure and objectives, it is clear that there will be much potential overlap in the ethical, legal and social issues that will arise. It was agreed that the Committee will move forward on the following two areas of collaboration:
I. The Committee will now have, as a standing agenda item, a regular update from the CPTP ELSI Taskforce. It was also unanimously agreed that approved, non-sensitive information from Committee meetings will be relayed back to the CPTP ELSI Taskforce.
II. CLSA/CPTP Joint Panels will be planned for upcoming conferences that include REB members in their audience.
CLSA-CPTP Joint Panels at Upcoming Ethics Conferences
11. The Committee discussed the possibility of organizing joint CLSA-CPTP plenary sessions for three upcoming national ethics conferences: the National Council on Ethics in Human Research conference, February 2010; the Canadian Association of Research Ethics Boards conference April 2010; and the Canadian Bioethics Society conference, June 2010. By targeting different ethics conferences, it is hoped that knowledge of these longitudinal studies will reach a broader audience who will, in turn, be better prepared for REB review of this type of research.