Privacy Protection and Genetic Research: Where Does the Public Interest Lie?

There is significant public interest in the outcomes of genetic research. However, there is also a great deal of concern that genetic research and associated realms will foster the use and disclosure of personal health and genetic information in ways that undermine protected privacy interests. This article proposes that a balance must be struck between legitimate public interests implicated in the collection, use, and disclosure of genetic information for research purposes. The article also explores the tension between the public interest in genetic research and the protection of individual privacy in relation to different policy regimes and reviews existing statutory rules, case law, and administrative decisions on the public interest exception in Canadian privacy law.