Highlights of Minutes - April 9, 2010

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

Sixth Meeting - Teleconference
1:00 p.m. – 3:00 p.m. EST, Friday April 9, 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)
Khaled El Emam, CHEO Research Institute
Debra Grant, Information and Privacy Commissioner of Ontario
Trudo Lemmens, University of Toronto
Norman O'Donnell, Community Member
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

Regrets:
Carman Baggaley, Office of the Privacy Commissioner of Canada
Mylène Deschênes, Public Population Project in Genomics Canada
Kieran O'Doherty, University of British Columbia
Christina Wolfson, CLSA Co-Principal Investigator, McGill University

Guests:
Erica Dobson, CIHR, CLSA
Paddi O'Hara, CIHR Consultant [Not present during teleconference but
had access to recording afterwards]

SUMMARY: The primary purpose of this meeting was to finalize recommendations on the Privacy and Confidentiality Policy. It was also an opportunity to be updated on the Data Access Policy.

Conflict of interest disclosure

1. There were no conflicts reported.

Publications disclosure

2. There were no publications reported.

Data access policy update

3. The Committee was debriefed on the CIHR intent to fund the CLSA as a research platform and the expectation that data will be made available to the broader research community, as well as the CLSA researchers, for the conduct of research. Members wanted to know if there are limits on the use of the data. The Committee was informed that the research projects using this platform and data generated from it must align with the intent of the CLSA ( i.e., with research on healthy aging).

4. It was noted that the CLSA's Data Access Committee (DAC) will be the gatekeeper of the data. Principal investigators and other CLSA co-investigators will have to apply to the DAC for access to the data just like all other researchers. The Data Access Policy and Terms of Reference will be discussed at a later meeting of the ELSI Committee as it is a critical part of the CLSA platform and its overall governance. It was also noted that the CLSA "owns" the policy but the Committee's recommendation to appoint a Privacy Officer and the various CLSA oversight committees should provide for proper checks and balances.

Draft CLSA Privacy and Confidentiality Policy

5. The Committee continued the in-depth discussion of the draft Privacy and Confidentiality Policy begun at the last meeting (March 11, 2010). It was agreed that it is a good document but clarification is needed regarding several issues, including the possibility of commercial use for data, range of options for withdrawing data and categories of data.

6. The Committee recommended that the CLSA Privacy and Confidentiality Policy be reviewed from time to time with input from all appropriate stakeholders, including the public.