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Volumn 44, Issue 1, 2016, Pages 7-19

Locating biobanks in the Canadian privacy maze

Author keywords

[No Author keywords available]

Indexed keywords

BIOBANK; CANADA; HUMAN; PRIVACY; RESEARCH ETHICS;

EID: 85018818923     PISSN: 10731105     EISSN: 1748720X     Source Type: Journal    
DOI: 10.1177/1073110516644185     Document Type: Article
Times cited : (7)

References (52)
  • 1
    • 85025840091 scopus 로고    scopus 로고
    • Privacy: A Fundamental Right in Canada
    • last visited January 14, 2016
    • “Privacy: A Fundamental Right in Canada,” Health Canada, available at (last visited January 14, 2016)
    • Health Canada
  • 2
    • 85025827693 scopus 로고    scopus 로고
    • OPC Guidance Documents, Office of the Privacy Commissioner of Canada, last visited February 27, 2015
    • “A Guide for Individuals Protecting Your Privacy,” OPC Guidance Documents, Office of the Privacy Commissioner of Canada, available at (last visited February 27, 2015)
    • A Guide for Individuals Protecting Your Privacy
  • 3
    • 84900138130 scopus 로고    scopus 로고
    • The End of Individual Control over Health Information: Promoting Fair Information Practices and Governance of Biobank Research
    • J. Kaye and M. Stranger, eds, University of Oxford, at 252, [The End of Individual Control]
    • T. Lemmens and L. Austin, “The End of Individual Control over Health Information: Promoting Fair Information Practices and Governance of Biobank Research,” in J. Kaye and M. Stranger, eds., Principles and Practice in Biobank Governance (University of Oxford, 2009) at 252, [The End of Individual Control].
    • (2009) Principles and Practice in Biobank Governance
    • Lemmens, T.1    Austin, L.2
  • 4
    • 85025841624 scopus 로고    scopus 로고
    • U.S. Anti-Terrorism Legislation Takes Away Consent, last visited January 25, 2016)
    • U.S. Anti-Terrorism Legislation Takes Away Consent, “Carters’ Charity Law Bulletin No. 128, available at (last visited January 25, 2016).
    • Carters Charity Law Bulletin No. 128
  • 6
    • 85025840715 scopus 로고    scopus 로고
    • . Process for the Determination of “Substantially Similar,” Provincial Legislation by the Governor in Council, Office of the Privacy Commissioner of Canada, last visited January 25, 2016)
    • Process for the Determination of “Substantially Similar,” Provincial Legislation by the Governor in Council, Office of the Privacy Commissioner of Canada, available at (last visited January 25, 2016)
  • 7
    • 85025843046 scopus 로고
    • An Act Respecting the Protection of Personal Information in the Private Sector, LRQ Chapter P-39.1
    • An Act Respecting the Protection of Personal Information in the Private Sector, LRQ Chapter P-39.1 (1994)
    • (1994)
  • 9
    • 85025842338 scopus 로고    scopus 로고
    • Revisiting Core Principles: Autonomy, Consent, and the Biobanking Challenge
    • J. Downie and E. Gibson, eds, Toronto: Irwin Law Inc
    • T. Caulfield, “Revisiting Core Principles: Autonomy, Consent, and the Biobanking Challenge,” in J. Downie and E. Gibson, eds., Health Law at the Supreme Court of Canada (Toronto: Irwin Law Inc., 2007) at 170.
    • (2007) Health Law at the Supreme Court of Canada , pp. 170
    • Caulfield, T.1
  • 10
    • 84893951702 scopus 로고    scopus 로고
    • The Right to Control and Access Genetic Research Information: Does McInerney Offer a Way Out of the Consent/Withdrawal Conundrum?
    • U. Ogbogu, S. Burningham, and T. Caulfield, “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.
    • (2014) UBC Law Review , vol.47 , Issue.1 , pp. 275-292
    • Ogbogu, U.1    Burningham, S.2    Caulfield, T.3
  • 12
    • 85025832275 scopus 로고    scopus 로고
    • Piljak Estate v. Abraham, ONSC 2893
    • Piljak Estate v. Abraham, 2014 ONSC 2893.
    • (2014)
  • 13
    • 85025810270 scopus 로고    scopus 로고
    • Property Rights and the Human Body
    • last visited January 25, 2016)
    • J. Wagner, “Property Rights and the Human Body” in Genomics Law Report, 2014, available at (last visited January 25, 2016).
    • (2014) Genomics Law Report
    • Wagner, J.1
  • 15
    • 79955608859 scopus 로고    scopus 로고
    • Methods for the De-identification of Electronic Health Records for Genomic Research
    • [Methods for the de-identification]
    • K. El Emam, “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].
    • (2011) Genome Medicine , vol.3 , Issue.4 , pp. 2
    • El Emam, K.1
  • 16
    • 84893195211 scopus 로고    scopus 로고
    • Policy Recommendations for addressing Primary Challenges Associated with Cell-based Research and Interventions
    • U. Ogbogu, S. Burningham, and A. Ollenberger et al., “Policy Recommendations for addressing Primary Challenges Associated with Cell-based Research and Interventions,” BMC Medical Ethics 15, no.2 (2014) at 3.
    • (2014) BMC Medical Ethics , vol.15 , Issue.2 , pp. 3
    • Ogbogu, U.1    Burningham, S.2    Ollenberger, A.3
  • 17
    • 85025803686 scopus 로고    scopus 로고
    • Management Strategies for Ethics in International Research
    • E. Lévesque and B.M. Knoppers, “Management Strategies for Ethics in International Research,” Current Genetic Medical Reports 2, no. 4 (2014): 255-260.
    • (2014) Current Genetic Medical Reports , vol.2 , Issue.4 , pp. 255-260
    • Lévesque, E.1    Knoppers, B.M.2
  • 18
    • 84873743291 scopus 로고    scopus 로고
    • Variation in Ethics Review of Multi-Site Research Initiatives
    • T. Caulfield, N. Ries, and G. Barr, “Variation in Ethics Review of Multi-Site Research Initiatives,” Amsterdam Law Forum 3, no. 1 (2011): 85-100.
    • (2011) Amsterdam Law Forum , vol.3 , Issue.1 , pp. 85-100
    • Caulfield, T.1    Ries, N.2    Barr, G.3
  • 19
    • 84924633598 scopus 로고    scopus 로고
    • Building a Data Sharing Model for Global Genomic Research
    • [Building a data sharing model]
    • P. Kossem, E. S. Dove, and C. Baggaley et al., “Building a Data Sharing Model for Global Genomic Research,” Genome Biology 15, no. 8 (2014):430-436 [Building a data sharing model].
    • (2014) Genome Biology , vol.15 , Issue.8 , pp. 430-436
    • Kossem, P.1    Dove, E.S.2    Baggaley, C.3
  • 20
    • 85025803356 scopus 로고    scopus 로고
    • Frequently Asked Questions on the Commissions Adequacy finding on the Canadian Personal Information Protection and Electronic Documents Act,”
    • last visited February 27, 2015)
    • “Frequently Asked Questions on the Commission’s Adequacy finding on the Canadian Personal Information Protection and Electronic Documents Act,” European Commission, available at (last visited February 27, 2015).
    • European Commission
  • 23
    • 84898288403 scopus 로고    scopus 로고
    • Use of Data from the Electronic Health Record for Health Research-Current Governance Challenges and Potential Approaches
    • D. J. Wilison, “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
    • (2009) Commissioned by the Office of the Privacy Commissioner of Canada
    • Wilison, D.J.1
  • 24
    • 84953253268 scopus 로고    scopus 로고
    • Towards an Ethics Safe Harbor for Global Biomedical Research
    • E. S. Dove, B. M. Knoppers, and M. H. Zawati, “Towards an Ethics Safe Harbor for Global Biomedical Research,” Journal of Law and the Biosciences 1, no. 1 (2014): 3-51.
    • (2014) Journal of Law and the Biosciences , vol.1 , Issue.1 , pp. 3-51
    • Dove, E.S.1    Knoppers, B.M.2    Zawati, M.H.3
  • 25
    • 85025809758 scopus 로고    scopus 로고
    • Banking for the Future: “Informing Consent in the Context of Biobanks,”
    • last visited January 25, 2016)
    • “Banking for the Future: “Informing” Consent in the Context of Biobanks,” Office of the Privacy Commissioner of Canada, available at (last visited January 25, 2016).
    • Office of the Privacy Commissioner of Canada
  • 26
    • 85025814840 scopus 로고    scopus 로고
    • Privacy, Consent, and Governance
    • Ethics, Law and Governance, K. Dierickx and P. Borry, eds. (Antwerp/Portland, OR: Intersentia
    • T. Lemmens and L. Austin, “Privacy, Consent, and Governance” in New Challenges for Biobanks: Ethics, Law and Governance, K. Dierickx and P. Borry, eds. (Antwerp/Portland, OR: Intersentia, 2009).
    • (2009) New Challenges for Biobanks
    • Lemmens, T.1    Austin, L.2
  • 28
    • 84882449721 scopus 로고    scopus 로고
    • Broad Consent versus Dynamic Consent in Biobank Research: Is Passive Participation an Ethical Problem?
    • K. S. Steinsbekk, B. K. Myskja, and B. Solberg, “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.
    • (2013) European Journal of Human Genetics , vol.21 , Issue.9 , pp. 97-902
    • Steinsbekk, K.S.1    Myskja, B.K.2    Solberg, B.3
  • 29
    • 84884216754 scopus 로고    scopus 로고
    • Data Sharing, Biobanks, and Informed Consent: A Research Paradox
    • C. Allen, Y. Joly, and P. G. Moreno, “Data Sharing, Biobanks, and Informed Consent: A Research Paradox,” McGill Journal of Law and Health 7, no. 1 (2013): 85-120.
    • (2013) Mcgill Journal of Law and Health , vol.7 , Issue.1 , pp. 85-120
    • Allen, C.1    Joly, Y.2    Moreno, P.G.3
  • 30
    • 84865653047 scopus 로고    scopus 로고
    • Involving Citizens in the Ethics of Biobank Research: Informing Institutional Policy through Structured Public Deliberation
    • K. C. O’Doherty, A. K. Hawkins, and M. M. Burgess, “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.
    • (2012) Social Science and Medicine , vol.75 , Issue.9 , pp. 1604-1611
    • O’Doherty, K.C.1    Hawkins, A.K.2    Burgess, M.M.3
  • 31
    • 84867497183 scopus 로고    scopus 로고
    • Biobanking, Consent, and Control: A Survey of Albertans on Key Research Ethics Issues
    • T. Caulfield, C. Rachul, and E. Nelson, “Biobanking, Consent, and Control: A Survey of Albertans on Key Research Ethics Issues,” Biopreservation and Biobanking 10, no. 5 (2012): 433-438.
    • (2012) Biopreservation and Biobanking , vol.10 , Issue.5 , pp. 433-438
    • Caulfield, T.1    Rachul, C.2    Nelson, E.3
  • 32
    • 85025816358 scopus 로고    scopus 로고
    • last visited January 25, 2016)
    • Canadian Partnership for Tomorrow Project, available at (last visited January 25, 2016)
  • 33
    • 70049104540 scopus 로고    scopus 로고
    • Canadian Partnership for Tomorrow Project, last visited January 25, 2016)
    • “Privacy and Confidentiality,” Canadian Partnership for Tomorrow Project, available at (last visited January 25, 2016).
    • Privacy and Confidentiality
  • 34
    • 85025821020 scopus 로고    scopus 로고
    • Consent Form: Second Wave of Recruitment of CARTaGENE
    • last visited January 25, 2016)
    • “Consent Form: Second Wave of Recruitment of CARTaGENE,” CARTaGENE, available at (last visited January 25, 2016).
    • Cartagene
  • 35
    • 85025827734 scopus 로고    scopus 로고
    • Consent and Withdrawal
    • last visited January 25, 2016)
    • “Consent and Withdrawal,” BC Generations Project, available at , (last visited January 25, 2016).
    • BC Generations Project
  • 36
    • 85025842925 scopus 로고    scopus 로고
    • last visited January 25, 2016)
    • The Tomorrow Project, available at , (last visited January 25, 2016)
    • The Tomorrow Project
  • 37
    • 85025829340 scopus 로고    scopus 로고
    • Public Notice: Genizon Biosciences Inc.
    • “Public Notice: Genizon Biosciences Inc.,” Genome Québec, 2012, available at
    • (2012) Genome Québec
  • 39
    • 84901668893 scopus 로고    scopus 로고
    • A Review of the Key Issues Associated with the Commercialization of Biobanks
    • at 106
    • T. Caulfield, S. Burningham, and Y. Joly et al., “A Review of the Key Issues Associated with the Commercialization of Biobanks,” Journal of Law and the Biosciences (2014): 94-110, at 106.
    • (2014) Journal of Law and the Biosciences , pp. 94-110
    • Caulfield, T.1    Burningham, S.2    Joly, Y.3
  • 41
    • 79960699766 scopus 로고    scopus 로고
    • From Consent to Institutions: Designing Adaptive Governance for Genomic Biobanks
    • K. C. O’Doherty, M. M. Burgess, and K. Edwards et al., “From Consent to Institutions: Designing Adaptive Governance for Genomic Biobanks,” Social Science & Medicine 73, no. 3 (2011): 367-374.
    • (2011) Social Science & Medicine , vol.73 , Issue.3 , pp. 367-374
    • O’Doherty, K.C.1    Burgess, M.M.2    Edwards, K.3
  • 42
    • 0037078980 scopus 로고    scopus 로고
    • Tribe Blasts ‘Exploitation of Blood Samples,”
    • R. Dalton, “Tribe Blasts ‘Exploitation’ of Blood Samples,” Nature 420, no. 6912 (2002): 111.
    • (2002) Nature , vol.420 , Issue.6912 , pp. 111
    • Dalton, R.1
  • 43
    • 85025813646 scopus 로고    scopus 로고
    • Ha-Shilth-Sa, last visited February 27, 2015)
    • D. Steel, “Blood Taken for Research Destroyed,”.Ha-Shilth-Sa. 2008, available at (last visited February 27, 2015).
    • (2008) Blood Taken for Research Destroyed
    • Steel, D.1
  • 44
    • 84880241963 scopus 로고    scopus 로고
    • Administering Colonial Science: Nutrition Research and Human Biomedical Experimentation in Aboriginal Communities and Residential Schools, 1942-1952
    • I. Mosby, “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
    • (2013) Social History , vol.46 , Issue.91 , pp. 145-172
    • Mosby, I.1
  • 46
    • 85017330346 scopus 로고    scopus 로고
    • Broken Trust Drives Native Health Disparities
    • L. Vogel, “Broken Trust Drives Native Health Disparities,” Canadian Medical Association Journal 187, no. 1 (2014):E9-E10
    • (2014) Canadian Medical Association Journal , vol.187 , Issue.1 , pp. EE9-E10
    • Vogel, L.1
  • 47
    • 85025819734 scopus 로고    scopus 로고
    • The New Ethics of Aboriginal Health Research
    • epub ahead of print
    • L. Vogel, “The New Ethics of Aboriginal Health Research,” Canadian Medical Association Journal (epub ahead of print).
    • Canadian Medical Association Journal
    • Vogel, L.1
  • 48
    • 85025816363 scopus 로고    scopus 로고
    • Genes, Patents, and Indigenous Peoples: Biomedical Research and Indigenous Peoples Rights,”
    • last visited January 25, 2016)
    • “Genes, Patents, and Indigenous Peoples: Biomedical Research and Indigenous Peoples’ Rights,” Cultural Survival, available at (last visited January 25, 2016).
    • Cultural Survival
  • 49
    • 84953212414 scopus 로고    scopus 로고
    • Charting the Privacy Landscape in Canadian Pediatric Biobanks
    • E.S. Dove, L. Black, D. Avard et al., “Charting the Privacy Landscape in Canadian Pediatric Biobanks,” Health Law Journal 20, no. 1 (2013):1-46.
    • (2013) Health Law Journal , vol.20 , Issue.1 , pp. 1-46
    • Dove, E.S.1    Black, L.2    Avard, D.3


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.