Deploying new information technologies in research: opportunities and challenges from a privacy perspective

Patricia Kosseim
Senior General Counsel and Director General,
Legal Services, Policy, Research and Technology Analysis Branch,
Office of the Privacy Commissioner of Canada (OPC)

Patricia provides strategic legal and policy advice on a broad range of privacy issues, oversees privacy research and analysis of emerging information technologies, and represents the Privacy Commissioner before courts and Parliamentary Committees.
 
Patricia has also worked at Genome Canada and the Canadian Institutes of Health Research where she developed and led national strategies to address ethical, legal and social implications of science and technology. 
 
Prior to moving to Ottawa, Patricia practiced as a lawyer in Montreal for over six years with a large national law firm.   
 
Patricia graduated in Business and Law from McGill University in Montreal and holds a Masters’ degree in Medical Law and Ethics from the King’s College London, UK. 
 
Called to the Barreau du Québec in 1993, she has since published and presented extensively on matters of health law, privacy and ethics.  In 2013-14 and 2014-15, she taught part-time at the Common Law section of the Faculty of Law, University of Ottawa.
                                                                                      
Patricia is currently a member of the Board of Governors of The Ottawa Hospital, the National DNA Databank Advisory Committee, and the Research Integrity Committee of the Fonds de recherche du Québec.

Timothy Banks, PhD, JD
Partner, Dentons

Tim advises on Data Governance and Consumer Protection laws and regulations, particularly in the E-commerce and M-commerce retail sectors. He is the Canadian Leader of Dentons’ Global Privacy and Data Security practice and is the Privacy Officer for the Firm’s Canada Region. 

Tim’s Data Governance practice encompasses all areas of the management of information. Whether the issue involves appropriate corporate record-keeping and document retention, privacy disclosures, data breach response, access to information requests, supplier and outsourcing contractual requirements, cross-border data transfers, or cloud computing, Tim has extensive knowledge and experience to guide clients in making practical choices based on an informed risk-based analysis. Tim is a litigator by training and represents clients before Information and Privacy Regulators across Canada. He was counsel in the first joint investigation by a Canadian Privacy Commissioner with an international counterpart.
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Dr. Alan Barolet, MD, FRCP(C)
Chair, UHN Biomedical Research Ethics Boards A & B

Dr. Barolet is a staff physician in the Division of Cardiology and Chair of the multidisciplinary boards of the Research Ethics Board at the University Health Network.  He received his MD and Ph.D. at the University of Toronto.  His research interests are in case selection and outcomes in interventional cardiology.
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Geoff Fernie, PhD, PEng, CEng, FCAHS
Institute Director, Research, Toronto Rehabilitation Institute, University Health Network

Geoff Fernie is the Institute Director, Research, at Toronto Rehabilitation Institute-University Health Network.  He has a primary appointment at the University of Toronto as Professor in the Department of Surgery with cross appointments that include the Institute of Biomaterials and Biomedical Engineering, Department of Mechanical and Industrial Engineering, Department of Physical Therapy and Department of Occupational Science and Occupational Therapy.
 
Dr. Fernie has led the creation of the most advanced product development and testing environment in rehabilitation technology in the world. He has a track record of taking inventions from the laboratory and making them available on the market.  He currently has 8 commercialized products and 4 currently in clinical trials, and has helped to launch several companies. In addition to his investigative work as a world class scientist, and an outstanding and progressive engineer, Dr. Fernie has served on numerous committees to inform and advance public policy pertaining to persons with disabilities; he has chaired a number of influential conferences to further advance the profile and the need to address issues related to disability and aging. Dr. Fernie has over 140 peer-reviewed journal papers and book chapters, 22 awarded patents and an additional 13 patent filings. 

Dr. Fernie has received several awards for his achievements in improving the lives of people with disabilities and exemplary dedication to the creation and design of modern technology, most recently the Queen Elizabeth II Diamond Jubilee Medal in 2012, the Inaugural 2014 Honourable David C. Onley Award and the Canadian Society for Biomechanics Biannual Career Award in 2014.
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Shivani Goyal, BEng, MASc
PhD Candidate, Healthcare Human Factors
Centre for Global eHealth Innovation, University Health Network

Shivani Goyal is a Clinical Engineering PhD candidate from the Institute of Biomaterials and Biomedical Engineering at the University of Toronto, conducting her research at the Centre for Global eHealth Innovation. Shivani’s research interests are in the realm of behavior change and chronic disease management. She is driven by the overwhelming prevalence of chronic disease and the need to improve the quality of health care delivery by maximizing the effectiveness of health interventions.

Shivani completed her Master’s thesis at the Montreal Heart Institute, where she evaluated innovative cardiovascular medical devices. She presented the safety, effectiveness and overall feasibility of the biomedical devices to the key decision makers of the hospital. Shivani also completed an internship with the Jewish General Hospital in Montreal, where she efficiently managed multiple medical technology replacement projects while simultaneously participating in research and development initiatives. Prior to her contributions to the healthcare industry, Shivani interned as an Aerospace Engineer at top organizations in both Canada and Europe.

Shivani received her MASc in Clinical Engineering from the Faculty of Medicine at the Université de Montréal and her Bachelor of Mechanical Engineering with a specialization in Thermo-fluids and Propulsion from Concordia University.
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Ann Heesters
Assoc. Director of Bioethics, University Health Network
Chair, UHN Rehabilitation Science and Medicine Research Ethics Board D
Member, Joint Centre for Bioethics, University of Toronto

Ann Heesters is the Associate Director of Bioethics at Toronto’s University Health Network, Chair of the UHN Rehabilitation Science and Medicine Research Ethics Board, and is a Bioethicist with the University of Toronto’s Joint Centre for Bioethics. Ann has been practicing in the field for approximately fifteen years and was the Director of Ethics at The Ottawa Hospital before coming to Toronto in 2009.

She has an abiding interest in the evolving standards of practice for health care ethicists and, with her colleagues at the American Society of Bioethics and Humanities, helped to author a code of ethics for ethicists. She was also a founding member of PHEEP (Practicing Healthcare Ethicists Exploring Professionalization) and founding director of the newly established non-profit Board called CAPHE (the Canadian Association of Practicing Healthcare Ethicists).

A former reservist with the Canadian Infantry, Ann periodically reviews research proposals (related to the rehabilitation of veterans and active duty service members) for the United States Department of Defense.
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Dr. Jack Holland, MD, FRCP(C)
Chair, UHN Oncology Research Ethics Board C

Jack Holland is currently Chair of the Oncology Research Ethics Board of the University Health Network. From 2003-2010, he was Chair of the Research Ethics Board of Hamilton Health Sciences/Faculty of Health Sciences and from 2010-2013, Chair of the Ontario Cancer Research Ethics Board at the Ontario Institute for Cancer Research.
 
Born in Ireland, Dr Holland received his medical degree from Queen’s University Belfast and certification in Internal Medicine through the Royal College of Physicians of London. In Canada, he completed pediatric training at the Hospital for Sick Children in Toronto and a research fellowship in pediatric endocrinology at the University of California in San Francisco.
 
Following a full time position in pediatric endocrinology at the Hospital for Sick Children from 1977 until 1990, Dr Holland was appointed Chair of Pediatrics at McMaster University and Chief of Pediatrics at McMaster Children’s Hospital. He is Past-President of the Canadian Paediatric Society (CPS) and has also served as President of the CPS Foundation.
 
Dr Holland has published widely, with specific research interests in growth and in abnormalities of pubertal development. He has been recognized for his innovative approach to medical education throughout his career in pediatrics, and is actively involved in the educational aspects of research ethics. From 2010 until 2013 he was elected as member at large to the Board of Directors of the Canadian Association of Research Ethics Boards (CAREB) and served as a member of CAREB’s Professional Development Committee.
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Rosario Isasi, JD, MPH
Centre of Genomics and Policy (CGP)
Faculty of Medicine, Department of Human Genetics, McGill University
International Stem Cell Forum - Ethics Working Party, Academic Secretariat

Rosario Isasi is currently a Research Associate at the Centre of Genomics and Policy, Faculty of Medicine, at McGill University. Mrs. Isasi has built an international reputation as a scholar with particular expertise in the area of comparative law and ethics regarding regenerative medicine.
 
Closely related to her academic work is her role as an ethics and policy adviser to government, professional and international bodies, such as the United Nations, where she played an active role in the adoption of the UN Declaration on Human Cloning. Most recently, she contributed to the development of harmonized ELSI and educational tools for Canadian Blood Services’ National Public Cord Blood Bank, the Centre for the Commercialization of Regenerative Medicine (CCRM) and to the Bioethics Education Project of the Royal College of Physicians and Surgeons of Canada.
 
Rosario Isasi holds many leadership roles in major international initiatives. She is the Academic Secretary of the International Stem Cell Forum Ethics Working Party and the Ethics/Policy Advisor of the European Human Pluripotent Stem Cell Registry (hESC^REG). She is a member of the Steering Committee and leads the Governance Working Group of the International Stem Cell Banking Initiative (ISCBI). Mrs. Isasi is a member of the Legal and Human Rights Advisory Board of the Genetics Policy Institute (GPI),  a member of the Bioethics and Legal Advisory Board of an EC-FP7 project on Biomaterials for Tracheal Replacement in Age-related Cancer via a Humanely Engineered Airway (BIOtrachea) and on regenerative medicine legislation (RegMedLaw, Translational Centre for Regenerative Medicine, Leipzig University).
 
Mrs. Isasi was the first post-doctoral fellow at the Canadian Program on Genomics and Global Health at Joint Centre for Bioethics, University of Toronto. She received further post-doctoral training at the Genetics and Society Project, Centre de Recherche en Droit Public, Université De Montréal. She holds her J.D. from the Pontifical Catholic University of Peru, where she practiced corporate and health law. She received her Masters of Public Health from Boston University, USA.
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Dr. Paul Kurdyak, MD, PhD
Director, Health Systems Research
Centre for Addiction and Mental Health (CAMH)

Dr. Kurdyak completed his medical degree, psychiatry residency training, and PhD in clinical epidemiology at the University of Toronto. He is a staff psychiatrist at the Centre for Addiction and Mental Health, and is the Director of the Health Outcomes and Performance Evaluation (HOPE) Research Unit within the Social and Epidemiological Research Program. Dr. Kurdyak is also the Lead of the Mental Health and Addictions Research Program at the Institute for Clinical Evaluative Science (ICES). Dr. Kurdyak provides oversight on the evaluation of complex mental health interventions and provincial strategies through his role as Director of Health Outcomes for the Medical Psychiatry Alliance and as a consultant to the Ministry of Health and Long-Term care and Health Quality Ontario.
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Tracy Stockley, PhD, FCCMG, FACMG
Associate Director, Molecular Diagnostics
Department of Pathology, University Health Network

Dr. Stockley is the Associate Director of the Molecular Diagnostics Division in the Department of Pathology at University Health Network, and an Assistant Professor in the Department of Laboratory Medicine and Pathobiology at University of Toronto.  Dr. Stockley has a PhD in Molecular Biology and Genetics, and certification in Clinical Molecular Genetics from the Canadian College of Medical Geneticists. Dr. Stockley’s interests include development of genomic tests for clinical laboratories, application of new technologies such as Next-Generation Sequencing to cancer care, and quality management for high-complexity clinical laboratory testing. Dr. Stockley currently sits on the Executive of the Cancer Genomics Program at the Princess Margaret Cancer Centre, the Laboratory Accreditation Advisory Panel for the Institute for Quality Management in Healthcare, the Board of Directors of the Canadian College of Molecular Geneticists, and the International Organization for Standardization Working Group on Molecular Genetics.
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Matthew Swarney, LLB
Senior Counsel and Director, Government Affairs, Motorola Solutions Canada

Matthew is Senior Counsel and Director of Government Affairs for Motorola Solutions Canada Inc.  As a member of the Canadian leadership team, Matthew’s responsibilities include providing strategic advice on all legal and regulatory matters for the corporation in Canada as well as leading the corporation’s outreach efforts with elected officials at all three orders of Government.  Matthew joined Motorola in 2001 as legal counsel and was made a member of the Canadian leadership team in 2010.  

Prior to joining, Motorola, Matthew practiced commercial and litigation law at a boutique firm in Toronto.
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Susan Zimmerman
Executive Director, Secretariat on Responsible Conduct of Research

Susan Zimmerman is the Executive Director of the Secretariat on Responsible Conduct of Research in Ottawa. SRCR is responsible for the implementation of the Tri-Agency Framework on Responsible Conduct of Research on behalf of the Canadian Institutes of Health Research (CIHR), the Natural Sciences and Engineering Research Council (NSERC) and the Social Sciences and Humanities Research Council (SSHRC). The Secretariat is also responsible for the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans.

She is a lawyer whose career has focused on health law and public policy. A native of Montreal, Susan received her undergraduate degree from Bryn Mawr College, civil law and common law degrees from McGill University, and a Master of Laws from the University of Toronto. Her professional experience includes positions as a senior research associate at the Centre for Medicine, Ethics and Law at McGill University, Director of Legislation and Law Reform at the Canadian Bar Association, legal counsel at Health Canada and Director of Research for the Law Commission of Canada. Prior to her appointment to the Secretariat in September, 2007, Ms Zimmerman was a member of the Health Law Group at the Toronto office of a national law firm, where she represented health care institutions and a variety of health care professionals.

Ms Zimmerman has also been a university lecturer in health law and ethics and a member of research ethics boards.
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trms@uhnresearch.ca

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Comments about TRMS 2015 were discussed on Twitter and on the Veritas IRB Blog: Part One and Part Two.

Deploying new information technologies in research: opportunities and challenges from a privacy perspective 

Patricia Kosseim
Senior General Counsel and Director General,
Legal Services, Policy, Research and Technology Analysis Branch,
Office of the Privacy Commissioner of Canada (OPC)
Presentation