Cancer Surveillance in Canada: Analysis of Legal and Policy Frameworks and Tools for Reform

By von Tigerstrom, Barbara; Ries, Nola M. | Health Law Journal, Annual 2009 | Go to article overview

Cancer Surveillance in Canada: Analysis of Legal and Policy Frameworks and Tools for Reform


von Tigerstrom, Barbara, Ries, Nola M., Health Law Journal


Introduction

Progress in cancer prevention and treatment depends on the collection and analysis of reliable information about the incidence, risk factors, and progression of cancer in the Canadian population. Every jurisdiction in Canada has a public cancer registry, operated by a cancer agency or subsumed within another government department or ministry. (1) These registries contain comprehensive information about patients diagnosed with cancer, which are used for various analyses and reports. Those who operate cancer registries are responsible for maintaining data security and considering requests for access to information by various third party data users. Surveillance and research activities facilitated through cancer registries are recognized as having a compelling public health purpose, but they take place in a context that has become increasingly sensitive to the rights of individuals to protection of their personal information. Ensuring that personal privacy is adequately protected, while maximizing the use of relevant data for surveillance and research, is an important challenge.

This article provides a comprehensive overview of the legal and policy framework for the use of cancer patient information for surveillance and research purposes in Canada. It analyzes various sources of law applicable to cancer registries and to the use and disclosure of personal health information in this context, with a view to identifying key gaps and weaknesses and outlining potential reforms. The article is based on a report produced for the Canadian Partnership Against Cancer, an independent, federally-funded organization working on cancer control in Canada. The research conducted for that report built on earlier work carried out in 1999-2000 for the Canadian Coalition on Cancer Surveillance by researchers at the Health Law Institute, University of Alberta, and the Centre de recherche en droit public at the Universite de Montreal. (2) Though it took the 2000 Report as a starting point, the new report was written as an independent document. In updating the legislative review carried out in 2000, some significant changes have taken place, most notably the proliferation of statutes for the protection of personal information.

This article is divided into five parts: Part 1 provides an overview of public health surveillance and the legal framework within which surveillance and research take place. In Part 2, the legislative framework is analyzed in more detail, focusing on legislation that is directly relevant to the collection, use and disclosure of personal health information by cancer registries. The relevant types of legislation are summarized, and the legislative framework is compared to a set of recommended characteristics. The Appendix contains a Table of Legislation which sets out, for easy reference, the key pieces of legislation (statutes and regulations) relevant to cancer surveillance and the use of cancer data. Part 3 supplements the discussion of legislation in Part 2 with an outline of the policies and procedures of cancer agencies and other bodies that are relevant to use and disclosure of cancer data. Part 4 then provides an assessment of the strengths and weaknesses of the legal and policy framework, and highlights some issues that may require further attention. Finally, Part 5 outlines and discusses a range of tools to improve the legal and policy framework, such as model legislation or policies, best practices, and guidelines. The conclusion discusses priorities for action and potential areas of future work.

Part 1: Cancer Surveillance and its Legal Context

Health surveillance is one of six core functions of public health. (3) Surveillance may be defined as:

   the tracking and forecasting of any health event or health
   determinant through the continuous collection of high-quality data,
   the integration, analysis and interpretation of those data into
   surveillance products (for example reports, advisories, alerts, and
   warnings), and the dissemination of those surveillance products to
   those who need to know. … 

The rest of this article is only available to active members of Questia

Sign up now for a free, 1-day trial and receive full access to:

  • Questia's entire collection
  • Automatic bibliography creation
  • More helpful research tools like notes, citations, and highlights
  • Ad-free environment

Already a member? Log in now.

Notes for this article

Add a new note
If you are trying to select text to create highlights or citations, remember that you must now click or tap on the first word, and then click or tap on the last word.
One moment ...
Default project is now your active project.
Project items

Items saved from this article

This article has been saved
Highlights (0)
Some of your highlights are legacy items.

Highlights saved before July 30, 2012 will not be displayed on their respective source pages.

You can easily re-create the highlights by opening the book page or article, selecting the text, and clicking “Highlight.”

Citations (0)
Some of your citations are legacy items.

Any citation created before July 30, 2012 will labeled as a “Cited page.” New citations will be saved as cited passages, pages or articles.

We also added the ability to view new citations from your projects or the book or article where you created them.

Notes (0)
Bookmarks (0)

You have no saved items from this article

Project items include:
  • Saved book/article
  • Highlights
  • Quotes/citations
  • Notes
  • Bookmarks
Notes
Cite this article

Cited article

Style
Citations are available only to our active members.
Sign up now to cite pages or passages in MLA, APA and Chicago citation styles.

(Einhorn, 1992, p. 25)

(Einhorn 25)

1

1. Lois J. Einhorn, Abraham Lincoln, the Orator: Penetrating the Lincoln Legend (Westport, CT: Greenwood Press, 1992), 25, http://www.questia.com/read/27419298.

Cited article

Cancer Surveillance in Canada: Analysis of Legal and Policy Frameworks and Tools for Reform
Settings

Settings

Typeface
Text size Smaller Larger Reset View mode
Search within

Search within this article

Look up

Look up a word

  • Dictionary
  • Thesaurus
Please submit a word or phrase above.
Print this page

Print this page

Why can't I print more than one page at a time?

Full screen

matching results for page

Cited passage

Style
Citations are available only to our active members.
Sign up now to cite pages or passages in MLA, APA and Chicago citation styles.

"Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences." (Einhorn, 1992, p. 25).

"Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences." (Einhorn 25)

"Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences."1

1. Lois J. Einhorn, Abraham Lincoln, the Orator: Penetrating the Lincoln Legend (Westport, CT: Greenwood Press, 1992), 25, http://www.questia.com/read/27419298.

Cited passage

Welcome to the new Questia Reader

The Questia Reader has been updated to provide you with an even better online reading experience.  It is now 100% Responsive, which means you can read our books and articles on any sized device you wish.  All of your favorite tools like notes, highlights, and citations are still here, but the way you select text has been updated to be easier to use, especially on touchscreen devices.  Here's how:

1. Click or tap the first word you want to select.
2. Click or tap the last word you want to select.

OK, got it!

Thanks for trying Questia!

Please continue trying out our research tools, but please note, full functionality is available only to our active members.

Your work will be lost once you leave this Web page.

For full access in an ad-free environment, sign up now for a FREE, 1-day trial.

Already a member? Log in now.