The Landscape of Rules Governing Access to Personal Information for Health Research: A View from Afar

• Published in: Health law journal 2003-01, p.113
• Main Author: Kosseim, Patricia
• Format: Article
• Language: English
• Subjects: Electronic health records; Federal legislation; Personal information; Personal Information Protection & Electronic Documents Act-Canada; Regulation
• ISSN: 1192-8336

Viewing Canada's statutory regime from a greater distance reveals some of the external forces that are potentially influencing the multitude and diversity of legislative approaches to privacy. For the purposes of the present paper, the author explores three possible forces that can help explain, in part, the roughness of our existing statutory landscape. These are: 1) the "top-down pressure" of international legal norms; 2) the "push-pull effect" of federal-provincial division of powers; and 3) the "bottom-up groundswell" of consumer demands. In 1966, the International Covenant on Economic, Cultural and Social Rights recognized the right of everyone to enjoy "the highest attainable standard of physical and mental health".49 Accordingly, State Parties undertook to take steps to achieve the full realization of this right, including those necessary for "the prevention, treatment and control of epidemic, endemic, occupational and other diseases" and "the creation of conditions which would assure to all medical service and medical attention in the event of sickness".50 Moreover, this same Covenant recognized the "right of everyone to enjoy the benefits of scientific progress and its applications".51 Hence, State Parties also undertook to take steps to achieve the full realization of this right, including those necessary for "the conservation, the development and the diffusion of science", and further undertook "to respect the freedom indispensable for scientific research".52 72 Timothy A. Caulfield & Tim Oiitcrbridge, "DNA Databanks, Public Opinion, and the Law" (2002) 25 Clin. Invest. Med. 256; D. Willison, "Consent-Based Registries: If you build them, who will come?" (Paper presented to the Canadian Institutes of Health Research, 14-15 November 2002, Ottawa) [unpublished]; similar conclusions were reached in D. Willison et al., "Patient Consent Preferences for Research Uses of Information in Electronic Medical Records: Interview and Survey Data" (2003) 326 Brit. Med. J., online: British Medical Journal ; E. Holowaty, "Public Attitudes to Non-Consensual Uses of Personal Information for Cancer Screening and Research", (Paper presented to the Canadian Institutes of Health Research, 14-15 November 2002, Ottawa) [unpublished].