Highlights of Minutes - February 19, 2010

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

Fourth Meeting: Teleconference
1:00 p.m. – 3:00 p.m. EST, Friday, February 19, 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)
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
Jill Scott, Vancouver Coastal Health Authority
Don Willison, Ontario Agency of Health Protection and Promotion

Ex officio members:
Linda Mealing, CIHR, CLSA

Regrets:
Kristiann Allen, CIHR Ethics Office
Nola Ries, University of Alberta
Christina Wolfson, CLSA Co-Principal Investigator, McGill University

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

SUMMARY: The primary purpose of this meeting was to discuss the CLSA Draft Privacy Policy as well as the Information Package and Consent Form for the Comprehensive Cohort. The Committee also heard updates regarding the status of the Community Member, presentations at ethics conferences and REB comments on the Information Package and Consent Form for the Tracking Cohort.

Community member

1. During previous meetings, the Committee discussed the need to add a community member to the roster and accordingly, a short list of potential community members was drawn from the B.C. Biolibrary Project. Members were informed that a potential candidate from this list has agreed to participate in the Committee.

Update on CAREB and NCEHR Conferences

2. Plans to collaborate with the ELSI Taskforce of the Canadian Partnership for Tomorrow Project (CPTP) by participating in a joint CLSA/CPTP panel at the upcoming annual conferences of the National Council on Ethics of Human Research and the Canadian Association of Research Ethics Boards were confirmed. Both joint panels will be dedicated to raising awareness among the REB community of the common ELS issues likely to arise in the context of large, national longitudinal research studies.

3. The first joint CLSA/CPTP ELS panel will be held at NCEHR, February 21, 2010 in Ottawa and will focus on general ELS issues relating to governance, process and multi-site REB Review. The second joint CLSA/CPTP ELS panel will take place at CAREB on April 30, 2010, in Montreal, and will concentrate on more substantive ELS issues, including initial and ongoing consent, data access and privacy.

Conflict of interest disclosure

4. There were no conflicts reported.

Publications disclosure

5. The Publication Policy has been amended according to suggestions made at the last meeting. This policy is now considered approved and will be revisited in six months.

6. Disclosure of any relevant publications by Committee members is now a standing item on the agenda. There were no publications reported.

Updates on CPTP ELSI Taskforce

7. The Committee was informed that the CPTP ELSI Taskforce has prepared comments on the 2^nd version of the revised Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS) with particular attention being paid to certain difficult elements such as incidental findings. The Taskforce is also examining the ethical and legal implications around the issue of electronic consent.

CLSA Draft Privacy Policy

8. Members discussed their preliminary observations of the CLSA Draft Privacy Policy (January 2010 version) as well as the specific reference questions posed by the CLSA Principal Investigators. Issues covered included the need for clarification of categories of personal information and levels of access; the unique challenge of "identifying purpose" when collecting information for future unspecified research purposes and the obligation to remain within the ambit of the original consent; distinguishing between the CLSA as a research "platform" versus a research "study" when it comes to the application of data protection principles; the need to reference other best practices or standard operating procedures; the need for a governance framework for the application of this policy; the possibility of creating a position for a Privacy Officer to administer the Privacy Policy; and the potential need for a Privacy Impact Assessment for the CLSA.

Information Package and Consent Form for the Tracking Cohort: Summary of REB Comments

9. In preparation for the next meeting, a summary of the issues raised by the seven REBs, which had reviewed the Tracking cohort protocol was presented. While no changes to study methodology were asked for, some clarifications and additional pieces of information were requested.

Information package and consent form for the comprehensive cohort

10. The Committee agreed that there is a need to address questions relating to: