Highlights of Minutes - May 28, 2010

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

Seventh Meeting - Teleconference
1:00 p.m. – 3:00 p.m. EST, Friday May 28, 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
Nola Ries, University of Alberta
Jill Scott, LLB, LLM, Barrister & Solicitor
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
Kieran O'Doherty, University of British Columbia
Norman O'Donnell, Community Member

Guests:
Erica Dobson, CIHR, CLSA
Paddi O'Hara, O'Hara Consulting, CIHR
Parminder Raina, CLSA Lead Principal Investigator
Jennifer Uniat, Senior Research Associate, McGill University

SUMMARY: The primary purpose of this meeting was to discuss advice concerning the draft Information Package and Consent Form for the Comprehensive Protocol.

Conflict of interest disclosure

1. Two issues were discussed to assess potential conflict of interest: one involved a contract employee and the other concerned collaboration on a grant. Members were satisfied that a conflict did not exist in either case.

Publications disclosure

2. There were no publications reported.

Debrief from annual conference of canadian association of research ethics boards (CAREB)

3. CLSA and the Canadian Partnership for Tomorrow Project (CPTP) collaborated on a very successful joint panel during the CAREB conference in Montreal (April 30, 2010). It was felt that the audience appreciated being able to compare the two projects and that the information provided would allow research ethics boards (REBs) to better anticipate some of the unique and challenging ethical issues they might soon have to consider in the context of large-scale longitudinal studies.

Debrief on Process Used to Arrive at ELSI Committee Recommendations on CLSA Privacy and Confidentiality Policy

4. The Committee was informed that their recommendations had been passed on to the CLSA Principal Investigators in the form of comments embedded in the Privacy Policy and an additional nine pages of remarks.

5. The CLSA investigators thanked the Committee for their valuable advice and queried whether a formal response to the ELSI advice was required. The Committee responded that some level of CLSA report back would be appropriate. The Committee was informed that the CLSA is considering creating a position for a Privacy Officer who would be able to integrate feedback from the Committee.

Information package and consent form for the comprehensive protocol

6. The Committee discussed their advice regarding the Information Package and Consent Form for the Comprehensive Protocol. Key points included important omissions to be addressed, clarifications to be made and suggested approaches to be considered for the consent process. Additionally, the members will have the opportunity to add comments to a first draft of the formal written advice (to be prepared based on the collation of all key points raised to date).