CHARTING THE PRIVACY LANDSCAPE IN CANADIAN PAEDIATRIC BIOBANKS

• Published in: Health law journal Vol. 20; p. 1
• Main Authors: Dove, Edward S, Black, Lee, Avard, Denise, Knoppers, Bartha M
• Format: Journal Article
• Language: English
• Published: Edmonton University of Alberta - Health Law Institute 01-01-2013
• Subjects: Children & youth; Medical databases; Medical research; Pediatrics; Personal information; Privacy; Canada
• ISSN: 1192-8336

Is unpacking the meaning of privacy a Sisyphean ordeal? While privacy has long been considered a "universal,"1 it is also labelled a "chameleonlike word,"2 "protean,"3 "ephemeral,"4 a "black box,"5 a "haystack in a hurricane,"6 and a "broad and somewhat evanescent concept."7 One wonders if a definition is possible or even necessary given that privacy instruments, such as the statutory privacy torts in Canada, do not state what privacy means.8 Some scholars have nobly attempted definitions,9 while others contend that any attempt to circumscribe privacy in a uniform and monolithic manner would undermine the richness, context-dependency, fluidity and malleability of the concept.10 27 Kristien Hens et al, "Developing a Policy for Paediatric Biobanks: Principles for Good Practice" (2013) 21 European Journal of Human Genetics 2 [Hens et al, "Principles"]; [Edward S Dove], Yann Joly & [Bartha M Knoppers], "Power to the People: A Wiki-Governance Model for Biobanks" (2012) 13 Genome Biology 158; Peter H Watson & Rebecca O Barnes, "A Proposed Schema for Classifying Human Research Biobanks" (2011) 9:4 Biopreservation and Biobanking 327; Catherine Heeney, "Dynamic Networks of Practice" in Jane Kaye et al, Governing Biobanks: Understanding the Interplay between Law and Practice (Oxford: Hart Publishing, 2012) 93 [Kaye et al, Governing Biobanks]; Susan MC Gibbons, "Regulating Biobanks: A Twelve-Point Typological Tool" (2009) 17:3 Med L Rev 313. See also James R Griesemer & Susan Leigh Star, "Institutional Ecology, 'Translations' and Boundary Objects: Amateurs and Professionals in Berkeley's Museum of Vertebrate Zoology, 1907-39" (1989) 19:3 Social Studies of Science 387 (describing boundary objects as entities that can be interpreted in different ways by different communities but are robust enough to maintain an identity across them). 59 Privacy legislation generally defines "personal information" or "health information" as "recorded information about an identifiable individual" or "identifying information about an individual in oral or recorded form." A contrario, information about non-identifiable individuals, e.g. anonymous or anonymized information, does not fall under the purview of the legislation. See e.g. Personal Health Information Protection Act, 2004, SO 2004, c 3, Sch A, s 4(2) ("'identifying information' means information that identifies an individual or for which it is reasonably foreseeable in the circumstances that it could be utilized, either alone or with other information, to identify an individual") [Ontario PHIPA]. A plain and ordinary meaning of "information" demonstrates that biological samples are not recorded information - only information extracted from those biological samples can be interpreted as recorded information (assuming it is documented in paper or electronic format and linked to an identifiable individual). Thus, most privacy statutes will not prima facie apply to genetic material or other biological samples collected for a biobank, though given DNA can be digitalized, a broad interpretation could apply. The current bi-modal legislative framework (i.e. "identifiable" information affords legal protection, "non-identifiable" information does not) affords clarity and predictability but little justification. Residual privacy interests may exist even in anonymized genetic information or biospecimens, given that Canadian Charter jurisprudence views privacy as forming a part of one's fundamental right to dignity, integrity and autonomy. See generally R v Mills, [1999] 3 SCR 668, 180 DLR (4th) 1; R v O'Connor, [1995] 4 SCR 411, 130 DLR (4th) 235; R v Plant. [1993] 3 SCR 281, 84 CCC (3d) 203. Identifiability, especially in the genomics field, exists on a continuum, and everevolving de- and re-identification techniques will continue to challenge and undermine the bi-modal model.