Highlights of Minutes - June 21, 2010

Advisory Committee on Ethical, Legal and Social Issues (ELSI) for the Canadian Longitudinal Study on Aging (CLSA)

Eighth Meeting - Teleconference
12:00 p.m. – 2:00 p.m. EST, Monday June 21, 2010

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, LLB, LLM, Barrister & Solicitor
Don Willison, Ontario Agency of Health Protection and Promotion

Ex officio members:
Linda Mealing, CIHR, CLSA
Christina Wolfson, CLSA Co-Principal Investigator, McGill University

Regrets:
Kristiann Allen, CIHR Ethics Office
Carman Baggaley, Office of the Privacy Commissioner of Canada
Trudo Lemmens, University of Toronto
Norman O'Donnell, Community Member

Guests:
Erica Dobson, CIHR, CLSA
Paddi O'Hara, O'Hara Consulting, CIHR
Jennifer Uniat, Senior Research Associate, McGill University

SUMMARY: The primary purpose of this meeting was to finalize comments and advice regarding the draft Comprehensive Information Package and Consent Form. It was also an opportunity to be updated on the four interrelated CLSA foundational documents.

Conflict of interest disclosure

1. There were no conflicts reported.

Publications disclosure

2. There were no publications reported.

Debrief from annual conference of canadian bioethics society (CBS)

3. As with previous National Council on Ethics in Human Research and Canadian Association of Research Ethics Boards meetings this year, CLSA and the Canadian Partnership for Tomorrow Project (CPTP) collaborated on a joint-panel during the Canadian Bioethics Society conference in Kelowna, British Columbia (June 12, 2010). The breakfast session was an opportunity to share information and perspectives.

Consolidation of Committee Advice on Comprehensive Information Package and Consent Form

4. The Committee discussed whether anything should be added to the consolidated Committee advice regarding the Information Package and Consent Form for the Comprehensive Protocol. It was agreed that all salient points had been captured although there were general concerns expressed regarding both the apparent increase in level of language complexity as well as the growing size and unwieldiness of the document.

5. The Committee agreed that a basic recommendation to the CLSA would be that the consent package be revised with simpler language that would follow the spirit, but not necessarily the exact wording, of the guidance being proposed by the Committee.

6. The Committee also agreed to recommend that information be presented in a layered format so that potential participants could access the appropriate amount and level of detail of information needed to make an informed decision about being part of the project (assuming that this could be different for different individuals).

Status Update on CLSA Foundational Documents

7. The Committee requested information about the status of the documents, such as policies and information provided to participants:

I. Intellectual Property Policy: is not planned for review by this Committee but this will be discussed among the principal investigators.
II. Privacy Policy: has been revised according to comments given by this Committee.
III. Consent Forms: is a current topic of discussion for this Committee.
IV. Data and Sample Access Policy: has been revised according to comments given by CIHR and has been linked to the Privacy Policy. The CLSA Principal Investigators hope to have comments from this Committee as soon as possible.