The Development of New Conceptual Paradigms Responding to Privacy and Access Challenges in Health Research

In Canadian society there is a critical need for access to health information for research purposes. At the same time, individual and group privacy have become matters of pressing concern for Canadians, with a corresponding need to trust that the privacy of our information is being protected. Personal health information is seen as worthy of the highest of protections, given its intimate nature. This multidisciplinary research proposal brings together a range of researchers from different sectors ¿ government, privacy commission, health authority, and academia ¿ to identify, describe, and explore new conceptual paradigms for the use of health information in research utilising legal and multidisciplinary methodologies. Given the centrality of the concept of informed consent as developed in law and ethics, and the complications that arise when one attempt to apply it in the area of secondary uses of health information, consent will be the prism through which the analysis will be developed. The paradigmatic approaches identified through the course of this research will provide a rich foundation for legislators and policy-makers to plan appropriate responses to the needs of researchers while respecting Canadians¿ privacy.