CHARTING THE PRIVACY LANDSCAPE IN CANADIAN PAEDIATRIC BIOBANKS Edward S. Dove, Lee Black, Denise Avard & Bartha M. Knoppers* 1. Introduction: The Evanescence of Privacy Is unpacking the meaning of privacy a Sisyphean ordeal? While privacy has long been considered a “universal,” 1 it is also labelled a “chameleon- like word,” 2 “protean,” 3 “ephemeral,” 4 a “black box,” 5 a “haystack in a * Edward S. Dove, LLM, is an Academic Associate at the Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University. Lee Black, LLM, is an Academic Associate at the Centre of Genomics and Policy and a DCL (PhD) candidate at McGill University, Faculty of Law. Denise Avard, PhD, is Research Director at the Centre of Genomics and Policy and an Associate Professor in the Department of Human Genetics, Faculty of Medicine, McGill University. Bartha M. Knoppers, PhD, OC, OQ, is Director of the Centre of Genomics and Policy and Canada Research Chair in Law and Medicine. All authors acknowledge and thank the Office of the Privacy Commissioner of Canada (OPC), the Maternal Infant Child and Youth Research Network (MICYRN), the Finding of Rare Disease Genes (FORGE) in Canada Project, and the Réseau de médecine génétique appliquée (RMGA) for funding to support this research and publication. 1 Judith Wagner DeCew, In Pursuit of Privacy: Law, Ethics, and the Rise of Technology (Ithaca, NY: Cornell University Press, 1997) at 12. 2 Lillian R BeVier, “Information About Individuals in the Hands of Government: Some Reflections on Mechanisms for Privacy Protection” (1995) 4 Wm & Mary Bill Rts J 455 at 458. 3 R v Tessling, [2004] 3 SCR 432 at para 25, 63 OR (3d) 1, Binnie J [Tessling]; Tom Gerety, “Redefining Privacy” (1977) 12 Harv CR-CLL Rev 233 at 234. 4 Ontario (AG) v Dieleman (1994), 20 OR (3d) 229 at para 568, 117 DLR (4th) 449 (Ont Gen Div). 5 Lars Øystein Ursin & Kristin Solum Steinsbekk, “Peeking into the Black Box of Privacy – Biobank Participants on the Importance of Recognition” (2012) 21:2 Norsk Epidemiologi 269.