Privacy and Access to Genetic Research Data Workshop
Date: March 13, 2009
Location: Faculty Common Room, University of Toronto Faculty of Law, 78 Queen’s Park
Download Lemmens and Austin paper here.
Download Ogbogu paper here.
Download Review of legislation relating to use and disclosure of personal (health) information for research purposes here.
Agenda
8:30 – 9am Breakfast
9-10:30am - Session I – Privacy Governance in the Genetic Era
Presentation by Trudo Lemmens, Associate Professor, University of Toronto Faculty of Law
Commentary #1: Don Willison, Associate Professor, Department of Clinical Epidemiology & Biostatistics, McMaster University
Commentary #2: Jane Kaye, Wellcome Trust Fellow in Medical Law, Ethox Centre, Oxford University
Commentary #3: Claude Laberge, Professor of Medicine and Pediatrics, Faculty of Medicine, Laval University
10:30 – 11am: Break/Networking
11:00 – 12:30: Session II – Genetic Research and Access to Information Law – Defining the Scope of Public/Private Interest
Presentation by Ubaka Ogbogu, Research Fellow, University of Toronto Faculty of Law
Commentary #1: Patricia Kosseim, Chief GE3LS Officer, Genome Canada
Commentary #2: Fiona Miller, Associate Professor, University of Toronto Faculty of Medicine, Health Policy, Management and Evaluation
Commentary #3: Patricia Shaw, Associate Professor, University of Toronto Department of Laboratory Medicine and Pathobiology; Director, University Health Network BioBank.
12:30-1:30: Lunch
1:30-3:00 - Session III – Technical aspects
Presentation by Bradley Malin, Assistant Professor, Department of Biomedical Informatics in the School of Medicine, Vanderbilt University
Commentary #1: Khaled El Emam, Associate Professor, Faculty of Medicine and the School of Information Technology and Engineering, Canada Research Chair in Electronic Health Information, University of Ottawa
Commentary #2: Mary O’Donoghue, General Counsel and Manager of Legal Services, Information and Privacy Commissioner, Ontario
Commentary #3: Lisa Austin, Associate Professor, University of Toronto Faculty of Law
3:00-3:15 – Break
3:15-4:45 -- General discussion – Issues, Consensus
Facilitator: Ruth Vale, Senior Privacy Analyst, eHealth Ontario
4.:45-6:30 – Reception
Sponsored by the Contributions Program, Office of the Privacy Commissioner of Canada
