Highlights of Minutes - September 28, 2010

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

Tenth Meeting - Teleconference
11:00 a.m. – 1:00 p.m. EST, Tuesday September 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, Office of the Privacy Commissioner of 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
Norman O'Donnell, Community Representative
Jill Scott, LLB, LLM, Barrister & Solicitor
Don Willison, Ontario Agency of Health Protection and Promotion

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

Regrets:
Nola Ries, University of Alberta

Guests:
Erica Dobson, CIHR, CLSA
Paddi O'Hara, O'Hara Consulting, CIHR

SUMMARY: The primary purpose of this meeting was to finalize comments and advice regarding the draft CLSA Data and Sample Access Policy and Procedures. It was also an opportunity to consider the workplan for the second year of this Committee.

Changes in CIHR Personnel

1. Sheila Chapman was welcomed as the new CIHR Ethics Office ex officio member of the Committee, replacing Kristiann Allen who was thanked for her support of this Committee over the last year.

2. The Committee bade farewell to Patricia Kosseim and expressed their thanks for her outstanding contribution as co-chair of this Committee.

Conflict of interest disclosure

3. There were no conflicts of interest reported.

Publications disclosure

4. There were no publications reported.

International oversight committee (IOC) meeting debrief

5. The Committee was debriefed on the September 10, 2010 meeting of the ELSI Co-Chairs with the International Oversight Committee (IOC) for the CLSA (see the August 31, 2010 Committee meeting highlights for a description of the IOC). The major topic of discussion was the respective roles and responsibilities of both committees. The objective of the meeting was to ensure that the work of both committees is accomplished in a complementary and collaborative way. The Co-Chairs reported that the IOC was enthusiastic about future interactions with this Committee.

Consolidation of Committee Advice on Clsa Data and Sample Access Policy and Procedures (DSAPP)

6. Committee members continued the discussion begun at the last meeting (August 31, 2010) regarding the draft DSAPP. The issues covered by the Committee included the approval process for researchers applying to the CLSA for access to data/samples; publication of approved requests for data/samples; the de-identification of data; the need to consult with relevant institutions to ensure coordination of the DSAPP with institutional policies; the obligations of the users of data and samples; the appropriate scope of the research; and the possibility of international and private sector researchers being eligible to access CLSA data in the future.

7. Comments arising from today's meeting, as well as comments previously recorded, will be consolidated and sent to the CLSA.

Forward workplan

8.0The next phase of work for the CLSA Principal Investigators will involve cross-referencing all the CLSA policies. The CLSA will present the Committee with a cohesive package of revised pillar documents when ready.

9. It was agreed that it is important for the ongoing work of the Committee to receive CLSA documents as revised and to be provided with the rationale for the acceptance or not of Committee advice.

10. Also, two priority issues were identified that would need attention from the CLSA and this Committee:

I. Returning results to research participants
II. Cognitive decline/capacity to consent

11. The Committee discussed options for addressing these two issues, including commissioning research/discussion papers; collaborating with the Canadian Partnership for Tomorrow (CPTP) ELSI and Privacy Task Force; and/or having a small sub-committee of Committee members prepare brief documents on these issues to assist Committee discussion.

Planning the next face-to-face committee meeting

12. The next face-to-face meeting of the Committee will focus on the review of the revised package of CLSA pillar documents; discussion of the two priority issues; and the CLSA Principal Investigators' updated work plan.