Designing a Model Policy Framework for Privacy Challenges in Cell Therapy Research

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Organization

University of Alberta (Health Law Institute)

Published

2013

Project Leader(s)

Ubaka Ogbogu, Assistant Professor, Faculty of Law and Timothy Caulfield, Canada Research Chair in Health Law and Policy, an Professor, Faculty of Law

Summary

This project investigated privacy issues arising from innovations in cell therapy research. The researchers conducted a systematic and comprehensive analysis of the academic literature to identify privacy issues associated with cell therapy research and assessed the application of the existing ethical and legal privacy frameworks to this context. This analysis resulted in three scholarly papers. Additionally, the researchers developed an updatable online bibliography and database of thematically-arranged papers and policy instruments. The database also contains links to publicly-accessible documents. They have presented their research and findings to scientists and trainees at academic workshops and conferences, and to members of the public through public lectures.

One of the main objectives of this project was to develop policy recommendations through collaboration with leading experts on health information and privacy, genetics, stem cell research, privacy law and research ethics. The researchers convened a multidisciplinary workshop involving these experts and various other stakeholders, including biobank managers, scientists, student trainees, bioinformaticians and policymakers, to discuss our research findings and to build consensus on recommendations for model policies and best practices. The workshop was a huge success and generated lively discussions and several key points to consider.

The researchers intend to build on their research by preparing a recommendations paper based on the outcomes of the workshop. They plan to seek publication of this paper in a peer-reviewed policy journal and make it available on the project website, in addition to the report on the workshop and other project activities.

This document is available in the following language(s):

English only

OPC Funded Project

This project received funding support through the Office of the Privacy Commissioner of Canada’s Contributions Program. The opinions expressed in the summary and report(s) are those of the authors and do not necessarily reflect those of the Office of the Privacy Commissioner of Canada. Summaries have been provided by the project authors. Please note that the projects appear in their language of origin.

Contact Information

Health Law Institute
Law Centre, University of Alberta
Edmonton AB  T6G 2H5

Email: hliadmin@ualberta.ca
Website: http://www.hli.ualberta.ca/
Tel: (780) 248-1175
Fax: (780) 492-9575

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