Literature DB >> 27256119

Locating Biobanks in the Canadian Privacy Maze.

Katie M Saulnier1, Yann Joly1.   

Abstract

Although Canada has not yet enacted any biobanking-specific privacy law, guidance and oversight are provided via various federal and provincial health and privacy-related laws as well as via ethics and policy documents. The primary policy document governing health research, the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, provides the framework for the strong role of Research Ethics Boards in Canada, and limits research funding from Canada's three main federal funding agencies to those who agree to adhere to its policies. The broad consent model is gaining traction in Canada, although lack of legal and constitutional precedence for the broad consent or opt-out options makes this an evolving issue. In general, data is required to be coded; more specific security measures are outlined in guidelines that may be implemented by local policy. International sharing is allowed, and Canada meets the European Union's standards for receipt of data and samples.
© 2016 American Society of Law, Medicine & Ethics.

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Year:  2016        PMID: 27256119     DOI: 10.1177/1073110516644185

Source DB:  PubMed          Journal:  J Law Med Ethics        ISSN: 1073-1105            Impact factor:   1.718


  3 in total

Review 1.  Sharing Data to Build a Medical Information Commons: From Bermuda to the Global Alliance.

Authors:  Robert Cook-Deegan; Rachel A Ankeny; Kathryn Maxson Jones
Journal:  Annu Rev Genomics Hum Genet       Date:  2017-04-17       Impact factor: 8.929

2.  Evolving data access policy: The Canadian context.

Authors:  Stephanie O M Dyke; Katie M Saulnier; Tomi Pastinen; Guillaume Bourque; Yann Joly
Journal:  Facets (Ott)       Date:  2016-09-15

Review 3.  Canada: will privacy rules continue to favour open science?

Authors:  Adrian Thorogood
Journal:  Hum Genet       Date:  2018-07-16       Impact factor: 4.132

  3 in total

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