Centre for Chronic Disease Prevention and Control

Cancer

Use of Cancer Patient Information for Surveillance Purposes

A Systematic Review of Legislation, Regulations, Policies and Guidelines
March 2000

Prepared for the Canadian Coalition
on Cancer Surveillance by:

Barbara von Tigerstrom
Health Law Institute, University of Alberta

Mylène Deschênes
Centre de recherche du droit public, Université de Montréal

Bartha Maria Knoppers
Centre de recherche du droit public, Université de Montréal

Timothy A. Caulfield
Health Law Institute, University of Alberta

1.01 Introduction

The aim of this document is to provide an overview of the legal context for cancer surveillance in Canada. It includes a review of relevant legislation and common law in all Canadian jurisdictions, in addition to selected codes, policies and procedures. Information from similar sources in other countries and from international agencies was reviewed to provide a basis for comparison with the Canadian context. This information is to be used to identify gaps or barriers in Canadian legislation and areas for further study or reform.

The project was undertaken by two research centres working in collaboration. The Health Law Institute at the University of Alberta was primarily responsible for collecting and analyzing the Canadian material, including legislation, common law and relevant standards and codes. Sources were identified by conducting electronic and library searches and through contacts at cancer registries across Canada. A literature review on cancer surveillance issues was also conducted.

The Centre de recherche en droit public at the Université de Montréal conducted the international research. Legislation and policies from other countries were collected and analyzed. The work of international agencies relevant to cancer research was also reviewed, including documents such as guidelines and recommendations relating to cancer registries. Further literature searches were conducted focusing on the international context. The research placed particular emphasis on privacy and confidentiality at the international level.

In order to collect the material for this project, inquiries were sent to all Canadian cancer registries and numerous registries and other agencies in other countries. Written inquiries were followed up with telephone conversations with registry personnel and government officials in many provinces and countries. The information gathered in this manner supplemented our research efforts using the internet, Quicklaw database and library resources. The content of this report is based on the most current information collected as of March 28, 2000. It should be noted that up-to-date material was much more readily available for some jurisdictions than others. Given the tremendous scope and dynamic nature of the subject matter, we cannot guarantee that the review is completely comprehensive; however, we feel confident that it discloses all relevant trends and issues related to this important area. To impose reasonable limits on the scope of the project, we have not dealt with the related areas of tissue banking or cancer screening; these raise many distinct issues that will need to be considered in detail elsewhere.

Section II of the report provides an overview of some relevant background material and current developments. Section III looks at the legal framework for cancer surveillance in Canada, including the common law, the Charter of Rights and Freedoms and the various types of legislation that may be relevant to cancer surveillance. Section IV provides a more detailed analysis of legislation, beginning with a summary of legislation on personal information and health information, followed by a review of the legislative framework in each Canadian jurisdiction. The last part of Section IV analyzes Canadian cancer legislation according to the performance criteria developed by the Canadian Coalition on Cancer Surveillance. Section V reviews some of the most important codes and guidelines relevant to cancer surveillance. Examination of the international material begins in Section VI with a description of international agencies relating to cancer and their activities and documents. Section VII describes the cancer registration systems in five selected countries. Section VIII discusses international standards with respect to privacy and data protection, and relevant legislation in four countries. Finally, Section IX outlines some issues and recommendations based on our research.