Hostname: page-component-745bb68f8f-b95js Total loading time: 0 Render date: 2025-01-13T14:27:00.705Z Has data issue: false hasContentIssue false
  • English
  • Français

Locating Biobanks in the Canadian Privacy Maze

Published online by Cambridge University Press:  01 January 2021

Katie M. Saulnier  and
Yann Joly
Get access Rights & Permissions [Opens in a new window]

Abstract

Although Canada has not yet enacted any biobanking-specific privacy law, guidance and oversight are provided via various federal and provincial health and privacy-related laws as well as via ethics and policy documents. The primary policy document governing health research, the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, provides the framework for the strong role of Research Ethics Boards in Canada, and limits research funding from Canada's three main federal funding agencies to those who agree to adhere to its policies. The broad consent model is gaining traction in Canada, although lack of legal and constitutional precedence for the broad consent or opt-out options makes this an evolving issue. In general, data is required to be coded; more specific security measures are outlined in guidelines that may be implemented by local policy. International sharing is allowed, and Canada meets the European Union's standards for receipt of data and samples.

Type
Symposium Articles
Information
Journal of Law, Medicine & Ethics , Volume 44 , Issue 1: Part II: Harmonizing Privacy Laws to Enable International Biobank Research , Spring 2016 , pp. 7 - 19
Copyright
Copyright © American Society of Law, Medicine & Ethics 2016

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

“Privacy: A Fundamental Right in Canada,” Health Canada, available at <http://www.hc-sc.gc.ca/ewh-semt/pubs/occup-travail/privacy-protection/index-eng.php> (last visited January 14, 2016); “A Guide for Individuals Protecting Your Privacy,” OPC Guidance Documents, Office of the Privacy Commissioner of Canada, available at <https://www.priv.gc.ca/information/pub/guide_ind_e.asp> (last visited February 27, 2015); Canadian Charter of Rights and Freedoms, Part I of the Constitution Act, 1982, being Schedule B to the Canada Act 1982 (U.K. 1982): chapter 11 [Charter].+(last+visited+January+14,+2016);+“A+Guide+for+Individuals+Protecting+Your+Privacy,”+OPC+Guidance+Documents,+Office+of+the+Privacy+Commissioner+of+Canada,+available+at++(last+visited+February+27,+2015);+Canadian+Charter+of+Rights+and+Freedoms,+Part+I+of+the+Constitution+Act,+1982,+being+Schedule+B+to+the+Canada+Act+1982+(U.K.+1982):+chapter+11+[Charter].>Google Scholar
Jones v. Tsige, 108 O.R. 3d) 241, 2012 ONCA 32.Google Scholar
R. v. Dyment, [1988] 2 S.C.R. 417 at 427.Google Scholar
R. v Tessling, [2004] 3 S.C.R. 432, 2004 SCC 67.Google Scholar
Personal Information Protection and Electronic Documents Act (R.S.C. 2000, c. 5), [PIPEDA].Google Scholar
Canadian Institute of Health Research, Best Practices for Protecting Privacy in Health Research, (November, 2005) at 110, [CIHR].Google Scholar
Id., at 111.Google Scholar
Id., at 5.Google Scholar
See Charter, supra note 1.Google Scholar
See PIPEDA, supra note 5.Google Scholar
Privacy Act (R.S.C., 1985, c. P-21) [Privacy Act].Google Scholar
Lemmens, T. and Austin, L., “The End of Individual Control over Health Information: Promoting Fair Information Practices and Governance of Biobank Research,” in Kaye, J. and Stranger, M., eds., Principles and Practice in Biobank Governance (University of Oxford, 2009) at 252, [The End of Individual Control].Google Scholar
U. S. Goh, “Canadian Privacy Legislation Requires Consent; U.S. Anti-Terrorism Legislation Takes Away Consent,” Carters’ Charity Law Bulletin No. 128, available at <http://www.carters.ca/pub/bulletin/charity/2007/chylb128.htm> (last visited January 25, 2016).+(last+visited+January+25,+2016).>Google Scholar
Anti-Terrorism Act (S.C. 2015, c.51).Google Scholar
“Legal Information Related to PIPEDA: Substantially Similar Provincial Legislation,” Office of the Privacy Commissioner of Canada, available at <https://www.priv.gc.ca/leg_c/legislation/ss_index_e.asp> (last visited January 25, 2016).+(last+visited+January+25,+2016).>Google Scholar
Process for the Determination of “Substantially Similar,” Provincial Legislation by the Governor in Council, Office of the Privacy Commissioner of Canada, available at <https://www.priv.gc.ca/leg_c/legislation/leg-rp_030611_e.asp> (last visited January 25, 2016)+(last+visited+January+25,+2016)>Google Scholar
Personal Health and Information Protection Act, S.O. 2004, ch. 3 (2004) (Ont.); Personal Health Privacy and Access Act, SNB, c P-7.05 (2009) (N.B.); Personal Health Information Act, SNL ch. P-7.01 (2011) (Nfld).Google Scholar
Personal Information Protection Act, Chapter P6.5 (2003) (Alta); Personal Information Protection Act, SBC 2003 Chapter 63 (2003) (B.C.); An Act Respecting the Protection of Personal Information in the Private Sector, LRQ Chapter P-39.1 (1994) (Q.C.).Google Scholar
“ “Questions and Answers regarding the application of PIPEDA, Alberta and British Columbia’s Personal Information Protection Acts,” Office of the Privacy Commissioner of Canada, available at <https://www.priv.gc.ca/resource/fsfi/02_05_d_26_e.asp> (last visited January 25, 2016).+(last+visited+January+25,+2016).>Google Scholar
Loi sur les services de santé et les services sociaux, LRQ chap-itre S-4.2 (1991) (Q.C.); Public Hospitals Act, R.S.O. 1990, ch. p.40 (1990) (Ont.).Google Scholar
Freedom of Information and Protection of Privacy Act, Chapter 5 (1993)(N.S.)Google Scholar
Freedom of Information and Protection of Privacy Act, RSBC 1996 ch. 165 (1996) (B.C); Personal Information International Disclosure Protection Act, ch. 3 (2006) (N.S.); Freedom of Information and Protection of Privacy Act, RSA 2000 ch. F-25 (2000), at s. 92(3).Google Scholar
Caulfield, T., “Revisiting Core Principles: Autonomy, Consent, and the Biobanking Challenge,” in Downie, J. and Gibson, E., eds., Health Law at the Supreme Court of Canada (Toronto: Irwin Law Inc., 2007) at 170.Google Scholar
Id., at 172.Google Scholar
McInerney v. MacDonald [1992] 2 S.C.R. 138.Google Scholar
Ogbogu, U., Burningham, S. and Caulfield, T., “The Right to Control and Access Genetic Research Information: Does McInerney Offer a Way Out of the Consent/Withdrawal Conundrum?” UBC Law Review 47, no. 1 (2014): 275–92.Google Scholar
C.L. c. D.S. QCSC (1999).Google Scholar
“Piljak Estate v. Abraham: Is Excised Human Tissue Personal Property?” Hull & Hull LP, 2014, available at <http://estatelaw.hullandhull.com/2014/06/articles/topics/ethical-issues/piljak-estate-v-abraham-is-excised-human-tissue-personal-property/> (last visited January 25, 2016); Piljak Estate v. Abraham, 2014 ONSC 2893.+(last+visited+January+25,+2016);+Piljak+Estate+v.+Abraham,+2014+ONSC+2893.>Google Scholar
Wagner, J., “Property Rights and the Human Body” in Genomics Law Report, 2014, available at <http://www.genomicslaw-report.com/index.php/2014/06/11/property-rights-and-the-human-body/#more-13297> (last visited January 25, 2016).+(last+visited+January+25,+2016).>Google Scholar
Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (2014) [TCPS2].Google Scholar
See CIHR, supra note 6.Google Scholar
See TCPS2, supra note 30.Google Scholar
Id., at 8.Google Scholar
Id., at 58.Google Scholar
Id., at 55.Google Scholar
Id., at 169.Google Scholar
Id., at 170.Google Scholar
Id., at 172.Google Scholar
“Canadian Tissue Repository Network: About Us,” available at <http://www.ctrnet.ca/about/us> (last visited January 25, 2016).+(last+visited+January+25,+2016).>Google Scholar
“CTRNet Policy Material Release: Policy 6 e2.0”, Canadian Tissue Repository Network (2012) at art. 6.1.2.Google Scholar
Id., at art. 6.4.1Google Scholar
See PIPEDA, supra note 5.Google Scholar
Id., at 4.3.4.Google Scholar
Id., at 4.7.1.Google Scholar
Id., at 4.7.3.Google Scholar
Id., at 4.7.5.Google Scholar
Id., at 4.5.3.Google Scholar
El Emam, K., “Methods for the De-identification of Electronic Health Records for Genomic Research,” Genome Medicine 3, no. 4 (2011) at 2, [Methods for the de-identification].Google Scholar
Ogbogu, U., Burningham, S. and Ollenberger, A. et al., “Policy Recommendations for addressing Primary Challenges Associated with Cell-based Research and Interventions,” BMC Medical Ethics 15, no.2 (2014) at 3.Google Scholar
Lévesque, E. and Knoppers, B.M., “Management Strategies for Ethics in International Research,” Current Genetic Medical Reports 2, no. 4 (2014): 255–260.Google Scholar
Caulfield, T., Ries, N. and Barr, G., “Variation in Ethics Review of Multi-Site Research Initiatives,” Amsterdam Law Forum 3, no. 1 (2011): 85–100.Google Scholar
“Questions and Answers Regarding the Application of PIPEDA, Alberta and British Columbia’s Personal Information Protection Acts,” Office of the Privacy Commissioner of Canada, available at <https://www.priv.gc.ca/resource/fsfi/02_05_d_26_e.asp> (last visited January 25, 2016.+(last+visited+January+25,+2016.>Google Scholar
Kossem, P., Dove, E. S. and Baggaley, C. et al., “Building a Data Sharing Model for Global Genomic Research,” Genome Biology 15, no. 8 (2014):430-436 [Building a data sharing model].Google Scholar
“Frequently Asked Questions on the Commission’s Adequacy finding on the Canadian Personal Information Protection and Electronic Documents Act,” European Commission, available at <http://ec.europa.eu/justice/policies/privacy/thridcoun-tries/adequacy-faq_en.htm> (last visited February 27, 2015).+(last+visited+February+27,+2015).>Google Scholar
Banks, T., “Europe Not Yet Satisfied with Adequacy of Québec’s Privacy Law,” available at <http://www.privacyanddatasecuritylaw.com/europe-not-yet-satisfied-with-adequacy-of-quebecs-privacy-law> (last visited January 25, 2016).+(last+visited+January+25,+2016).>Google Scholar
“Opinion 7/2014 on the Protection of Personal Data in Quebec,” available at <http://ec.europa.eu/justice/data-protection/article-29/documentation/opinion-recommendation/files/2014/wp219_en.pdf> (last visited January 25, 2016).+(last+visited+January+25,+2016).>Google Scholar
See Kossem, , supra note 53, at 433.Google Scholar
See El Enam, , supra note 48.Google Scholar
See TCPS2, supra note 30, at 67.Google Scholar
Wilison, D. J., “Use of Data from the Electronic Health Record for Health Research-Current Governance Challenges and Potential Approaches,” commissioned by the Office of the Privacy Commissioner of Canada, 2009; Dove, E. S., Knoppers, B. M. and Zawati, M. H., “Towards an Ethics Safe Harbor for Global Biomedical Research,” Journal of Law and the Biosciences 1, no. 1 (2014): 3–51.Google Scholar
See Lemmens, , supra note 12.Google Scholar
Id., at 255.Google Scholar
“Banking for the Future: “Informing” Consent in the Context of Biobanks,” Office of the Privacy Commissioner of Canada, available at <https://www.priv.gc.ca/media/sp-d/2011/sp-d_20110121_pk_e.asp> (last visited January 25, 2016).+(last+visited+January+25,+2016).>Google Scholar
Lemmens, T. and Austin, L., “Privacy, Consent, and Governance” in New Challenges for Biobanks: Ethics, Law and Governance, Dierickx, K. and Borry, P., eds. (Antwerp/Portland, OR: Intersentia, 2009).Google Scholar
Caulfield, T. and Knoppers, B. M., “Consent, Privacy & Research Biobanks,” Genome Canada 1, Policy Brief 7 (2010): 1.Google Scholar
Steinsbekk, K. S., Myskja, B. K. and Solberg, B., “Broad Consent versus Dynamic Consent in Biobank Research: Is Passive Participation an Ethical Problem?” European Journal of Human Genetics 21, no. 9 (2013): 97–902.Google Scholar
Allen, C., Joly, Y. and Moreno, P. G., “Data Sharing, Biobanks, and Informed Consent: A Research Paradox,” McGill Journal of Law and Health 7, no. 1 (2013): 85–120.Google Scholar
L.D. (Guardian ad litem of) v. Provincial Health Services Authority, 2012 BCCA 491.Google Scholar
O’Doherty, K. C., Hawkins, A. K. and Burgess, M. M., “Involving Citizens in the Ethics of Biobank Research: Informing Institutional Policy through Structured Public Deliberation,” Social Science and Medicine 75, no. 9 (2012):1604–1611.Google Scholar
See TCPS2, supra note 30.Google Scholar
Id.Google Scholar
Caulfield, T., Rachul, C. and Nelson, E., “Biobanking, Consent, and Control: A Survey of Albertans on Key Research Ethics Issues,” Biopreservation and Biobanking 10, no. 5 (2012): 433–438.Google Scholar
Id.Google Scholar
Canadian Partnership for Tomorrow Project, available at <http://www.partnershipfortomorrow.ca> (last visited January 25, 2016); see also Allen supra note 64.+(last+visited+January+25,+2016);+see+also+Allen+supra+note+64.>Google Scholar
“Privacy and Confidentiality,” Canadian Partnership for Tomorrow Project, available at <http://www.partnership-fortomorrow.ca/cptp/portal/WhyHelp?_afrLoop=1410828653095000&lang=en&_afrWindowMode=0&_adf.ctrl-state=gb00knfgc_4> (last visited January 25, 2016).+(last+visited+January+25,+2016).>Google Scholar
“Consent Form: Second Wave of Recruitment of CARTaGENE,” CARTaGENE, available at <http://www.cartagene.qc.ca/sites/default/files/cartagene_consentement_en_v3_7apr2014.pdf> (last visited January 25, 2016).+(last+visited+January+25,+2016).>Google Scholar
“Consent and Withdrawal,” BC Generations Project, available at <http://www.bcgenerationsproject.ca/how-it-works/consent-withdrawal/>, (last visited January 25, 2016).,+(last+visited+January+25,+2016).>Google Scholar
The Tomorrow Project, available at <http://in4tomorrow.ca/JoinTheStudy.aspx>, (last visited January 25, 2016),+(last+visited+January+25,+2016)>Google Scholar
“Public Notice: Genizon Biosciences Inc.,” Genome Québec, 2012, available at <http://www.genomequebec.com/81-en/news-public-notice-genizon-biosciences-inc-.html>; K. Davies, “Quebec’s Genizon Biosciences Closes Its Doors,” available at <http://www.bio-itworld.com/news/09/07/2011/Quebec-Genizon-Biosciences-closes-doors.html> (last visited January 25, 2016).;+K.+Davies,+“Quebec’s+Genizon+Biosciences+Closes+Its+Doors,”+available+at++(last+visited+January+25,+2016).>Google Scholar
Caulfield, T., Burningham, S. and Joly, Y. et al., “A Review of the Key Issues Associated with the Commercialization of Bio-banks,” Journal of Law and the Biosciences (2014): 94-110, at 106.Google Scholar
PreThera Research, Networks of Centres of Excellence of Canada, available at <http://www.nce-rce.gc.ca/NetworksCentres-CentresReseaux/BLNCE-RCEE/PreThera_eng.asp> (last visited January 25, 2016).+(last+visited+January+25,+2016).>Google Scholar
O’Doherty, K. C., Burgess, M. M. and Edwards, K. et al., “From Consent to Institutions: Designing Adaptive Governance for Genomic Biobanks,” Social Science & Medicine 73, no. 3 (2011): 367–374.Google Scholar
Id., at 367.Google Scholar
Id., at 373.Google Scholar
Id., at 369.Google Scholar
Dalton, R., “Tribe Blasts ‘Exploitation’ of Blood Samples,” Nature 420, no. 6912 (2002): 111.Google Scholar
Steel, D., “Blood Taken for Research Destroyed,”.Ha-Shilth-Sa. 2008, available at <http://www.hashilthsa.com/archive/news/2013-07-22/blood-taken-research-destroyed> (last visited February 27, 2015).+(last+visited+February+27,+2015).>Google Scholar
Mosby, I., “Administering Colonial Science: Nutrition Research and Human Biomedical Experimentation in Aboriginal Communities and Residential Schools, 1942-1952,” Social History, 46, no. 91 (2013):145-172; M. Castanello “Ethics of Aboriginal Research,” available at <http://www.naho.ca/jah/english/jah01_01/journal_p98-114.pdf> (last visited January 25, 2016); L. Vogel, “Broken Trust Drives Native Health Disparities,” Canadian Medical Association Journal 187, no. 1 (2014):E9-E10; L. Vogel, “The New Ethics of Aboriginal Health Research,” Canadian Medical Association Journal (epub ahead of print).Google Scholar
“Genes, Patents, and Indigenous Peoples: Biomedical Research and Indigenous Peoples’ Rights,” Cultural Survival, available at <http://www.culturalsurvival.org/publications/cultural-survival-quarterly/canada/genes-patents-and-indigenous-peoples-biomedical-rese> (last visited January 25, 2016).+(last+visited+January+25,+2016).>Google Scholar
Dove, E.S., Black, L., Avard, D. et al., “Charting the Privacy Landscape in Canadian Pediatric Biobanks,” Health Law Journal 20, no. 1 (2013):1–46.Google Scholar
Samuel, E J., Knoppers, B.M. and Avard, D., “Paediatric Bio-banks: What Makes Them So Unique?,” Journal of Paediatrics and Child Health 48, no. 2 (2012):E1-E3.Google Scholar
Dove, E E.S., Black, L., Avard, D. et al., “Privacy in Canadian Paediatric Biobanks: A Changing Landscape: A Report Delivered to the Privacy Commissioner of Canada,” Centre of Genomics and Policy, 2011.Google Scholar
Id., at 21.Google Scholar
Avard, D., Black, L., Samuël, J. et al., “Best Practices for Health Research Involving Children and Adolescents,” Centre of Genomics and Policy (CGP), Maternal Infant Child and Youth Research Network (MICYRN), 2012.Google Scholar
Id. at 27.Google Scholar
Constitution Act, 1982, being Schedule B to the Canada Act 1982 (UK), 1982, c 11.Google Scholar