메뉴 건너뛰기




Volumn , Issue , 2009, Pages 244-266

The end of individual control over health information: Promoting fair information practices and the governance of biobank research

Author keywords

[No Author keywords available]

Indexed keywords


EID: 84900138130     PISSN: None     EISSN: None     Source Type: Book    
DOI: None     Document Type: Chapter
Times cited : (2)

References (80)
  • 1
    • 84900198857 scopus 로고    scopus 로고
    • Online, Available at, accessed 16 December 2008
    • 23andMe. [Online] Available at: https://www.23andme.com/health/ [accessed 16 December 2008].
    • 23andMe
  • 2
    • 84900122982 scopus 로고    scopus 로고
    • Data collection from legally incompetent subjects: A paradigm legal and ethical challenge for population databanks
    • Special Edition, Online, Available at
    • Archibald, T. and Lemmens, T. 2008. Data Collection from Legally Incompetent Subjects: A Paradigm Legal and Ethical Challenge for Population Databanks. Health Law Journal (Special Edition). [Online] Available at: http://ssrn.com/abstract=1267204.
    • (2008) Health Law Journal
    • Archibald, T.1    Lemmens, T.2
  • 3
    • 84900155732 scopus 로고    scopus 로고
    • Is consent the foundation of fair information practices? Canada's experience under pipeda
    • Austin, L.M. 2004. Is Consent the Foundation of Fair Information Practices? Canada's Experience Under PIPEDA. University of Toronto Law Journal, 54, 183.
    • (2004) University of Toronto Law Journal , vol.54 , pp. 183
    • Austin, L.M.1
  • 4
    • 0038618794 scopus 로고    scopus 로고
    • Genebanks: A comparison of eight proposed international genetic databases
    • Austin, M.A., Harding, S. and McElroy, C. 2003. Genebanks: A Comparison of Eight Proposed International Genetic Databases. Community Genetics, 6, 37.
    • (2003) Community Genetics , vol.6 , pp. 37
    • Austin, M.A.1    Harding, S.2    McElroy, C.3
  • 5
    • 38049056365 scopus 로고    scopus 로고
    • Privatizing biomedical research - A 'third way
    • Bouchard, R. and Lemmens, T. 2008. Privatizing Biomedical Research - A 'Third Way'. Nature Biotechnology, 1, 31.
    • (2008) Nature Biotechnology , vol.1 , pp. 31
    • Bouchard, R.1    Lemmens, T.2
  • 6
    • 23444443065 scopus 로고    scopus 로고
    • Whose tissue is it anyway?
    • Bovenberg, J. 2005. Whose Tissue is it Anyway? Nature Biotechnology, 23, 929.
    • (2005) Nature Biotechnology , vol.23 , pp. 929
    • Bovenberg, J.1
  • 7
    • 84900253983 scopus 로고    scopus 로고
    • Dna detectives can decode 'censored' genomes
    • Online, Available at
    • Callaway, E. 2008. DNA Detectives Can DeCode 'Censored' Genomes. Short Sharp Science New Scientist News Blog. [Online] Available at: http://www.newscientist.com/blogs/shortsharpscience/2008/10/dna-detectives-candecode-cens.html.
    • (2008) Short Sharp Science New Scientist News Blog
    • Callaway, E.1
  • 8
    • 84900100515 scopus 로고    scopus 로고
    • Gene banks and blanket consent
    • Caulfield, T. 2002. Gene Banks and Blanket Consent. Nature Reviews Genetics, 3, 2.
    • (2002) Nature Reviews Genetics , vol.3 , pp. 2
    • Caulfield, T.1
  • 9
    • 38549099198 scopus 로고    scopus 로고
    • Biobanks and blanket consent: The proper place of the public good and public perception rationales
    • Caulfield, T. 2007. Biobanks and Blanket Consent: The Proper Place of the Public Good and Public Perception Rationales. Kings Law Journal, 18, 209.
    • (2007) Kings Law Journal , vol.18 , pp. 209
    • Caulfield, T.1
  • 10
    • 0347750518 scopus 로고    scopus 로고
    • Dna databanks and consent: A suggested policy option involving an authorization model
    • Caulfield, T.R., Upshur, R. and Daar, A. 2003. DNA Databanks and Consent: A Suggested Policy Option Involving an Authorization Model. BMC Medical Ethics, 4(1).
    • (2003) BMC Medical Ethics , vol.4 , Issue.1
    • Caulfield, T.R.1    Upshur, R.2    Daar, A.3
  • 11
    • 51649127780 scopus 로고    scopus 로고
    • The ontario cancer research ethics board: A central reb that works
    • Chaddah, M.R. 2008. The Ontario Cancer Research Ethics Board: A Central REB that Works. Current Oncology, 15, 49.
    • (2008) Current Oncology , vol.15 , pp. 49
    • Chaddah, M.R.1
  • 12
    • 0035050575 scopus 로고    scopus 로고
    • Human genetics research, dna banking and consent: A question of form
    • Deschênes, M. et al. 2001. Human Genetics Research, DNA Banking and Consent: A Question of Form. Clinical Genetics, 59, 221.
    • (2001) Clinical Genetics , vol.59 , pp. 221
    • Deschênes, M.1
  • 13
    • 84900087847 scopus 로고    scopus 로고
    • Online: New Scientist Science Blog, Available at, accessed 1 January 2009
    • DNA Detectives Can DeCode 'Censured' Genomes. 2008. [Online: New Scientist Science Blog] Available at: http://www.newscientist.com/blogs/shortsharpscience/2008/10/dna-detectives-can-decode-cens.htm [accessed 1 January 2009].
    • (2008) DNA Detectives Can DeCode 'Censured' Genomes
  • 14
    • 84880257447 scopus 로고    scopus 로고
    • The canadian agency for the oversight of research involving humans: A reform proposal
    • Downie J. 2006. The Canadian Agency for the Oversight of Research Involving Humans: A Reform Proposal. Accountability in Research, 13, 75.
    • (2006) Accountability in Research , vol.13 , pp. 75
    • Downie, J.1
  • 15
    • 84900284195 scopus 로고    scopus 로고
    • Online: FlyBase, Available at
    • ENCODE Consortia Data Release, Data Use, and Publication. 2008. [Online: FlyBase] Available at: http://flybase.org/static_pages/news/articles/2008_09/encode_data_release_policy.pdf.
    • (2008) ENCODE Consortia Data Release, Data Use, and Publication
  • 16
    • 84967138100 scopus 로고    scopus 로고
    • Questions and challenges in the governance of research involving humans: A canadian perspective
    • edited by Trudo Lemmens and Duff R. Waring. Toronto: University of Toronto Press
    • Glass K.C. 2006. Questions and Challenges in the Governance of Research Involving Humans: A Canadian Perspective, in Law and Ethics in Biomedical Research: Regulation, Conflict of Interest, and Liability, edited by Trudo Lemmens and Duff R. Waring. Toronto: University of Toronto Press, 35.
    • (2006) Law and Ethics in Biomedical Research: Regulation, Conflict of Interest, and Liability , pp. 35
    • Glass, K.C.1
  • 17
    • 1342282436 scopus 로고    scopus 로고
    • Data storage and dna banking for biomedical research: Informed consent, confidentiality, quality issues, ownership, return of benefits. A professional perspective
    • Godard, B. et al. 2003. Data Storage and DNA Banking for Biomedical Research: Informed Consent, Confidentiality, Quality Issues, Ownership, Return of Benefits. A Professional Perspective. European Journal Human Genetics, 11, 88.
    • (2003) European Journal Human Genetics , vol.11 , pp. 88
    • Godard, B.1
  • 18
    • 0035679044 scopus 로고    scopus 로고
    • Informed consent and other ethical issues in human population genetics
    • Greely, H.T. 2001. Informed Consent and Other Ethical Issues in Human Population Genetics. Annual Review of Genetics, 35, 785.
    • (2001) Annual Review of Genetics , vol.35 , pp. 785
    • Greely, H.T.1
  • 19
    • 0003655965 scopus 로고
    • Online: Organization for Economic Co-operation and Development, Available at, accessed 29 December 2008
    • Guidelines on the Protection of Privacy and Transborder Flows of Personal Data. 1980. [Online: Organization for Economic Co-operation and Development] Available at: http://www.oecd.org/document/18/0,3343,en_2649_34255_1815 186_1_1_1_1,00.html [accessed 29 December 2008].
    • (1980) Guidelines on the Protection of Privacy and Transborder Flows of Personal Data
  • 20
    • 60449100712 scopus 로고    scopus 로고
    • The regulation of human biomedical research, in Canada
    • 3rd Edition, edited by J. Downie, T. Caulfield and C. Flood. Canada: LexisNexis
    • Hadskis, M. 2007. The Regulation of Human Biomedical Research, in Canada, in Canadian Health Law and Policy. 3rd Edition, edited by J. Downie, T. Caulfield and C. Flood. Canada: LexisNexis.
    • (2007) Canadian Health Law and Policy
    • Hadskis, M.1
  • 21
    • 0003497355 scopus 로고    scopus 로고
    • Health Canada, Online, Available at, accessed 29 December 2008
    • Health Canada. 1996. Guidance for Industry - Good Clinical Practice: Consolidated Guideline. [Online] Available at: http://www.hc-sc.gc.ca/dhp-mps/alt_formats/hpfb-dgpsa/pdf/prodpharma/e6-eng.pdf [accessed 29 December 2008].
    • (1996) Guidance for Industry - Good Clinical Practice: Consolidated Guideline
  • 22
    • 0033738951 scopus 로고    scopus 로고
    • A comparative analysis of research ethics review mechanisms and the ich good clinical practice guideline
    • Hirtle, M., Lemmens, T. and Sprumont, D. 2000. A Comparative Analysis of Research Ethics Review Mechanisms and the ICH Good Clinical Practice Guideline. European Journal of Health Law, 7, 265.
    • (2000) European Journal of Health Law , vol.7 , pp. 265
    • Hirtle, M.1    Lemmens, T.2    Sprumont, D.3
  • 23
    • 33645959004 scopus 로고    scopus 로고
    • Broad consent - The only option for population genetic databases?
    • edited by G. Árnason, S. Nordal and V. Árnason. Reykjavík: University of Iceland Press
    • Kaye, J. 2004. Broad Consent - the Only Option for Population Genetic Databases? in Blood and Data, Ethical, Legal and Social Aspects of Human Genetic Databases, edited by G. Árnason, S. Nordal and V. Árnason. Reykjavík: University of Iceland Press, 103.
    • (2004) Blood and Data, Ethical, Legal and Social Aspects of Human Genetic Databases , pp. 103
    • Kaye, J.1
  • 24
    • 77951480975 scopus 로고    scopus 로고
    • Policy by procrastination: Secondary use of electronic health records for health research purposes
    • Kosseim, P. and Brady, M. 2008. Policy by Procrastination: Secondary Use of Electronic Health Records for Health Research Purposes. McGill Journal of Law and Health, 2, 5.
    • (2008) McGill Journal of Law and Health , vol.2 , pp. 5
    • Kosseim, P.1    Brady, M.2
  • 26
    • 3042647047 scopus 로고    scopus 로고
    • Genetic databases: Assessing the benefits and impact on human and patient rights - A who report
    • Laurie, G. 2004. Genetic Databases: Assessing the Benefits and Impact on Human and Patient Rights - A WHO Report. European Journal of Health Law, 11, 87.
    • (2004) European Journal of Health Law , vol.11 , pp. 87
    • Laurie, G.1
  • 28
    • 70649083613 scopus 로고    scopus 로고
    • Research without borders: The origins of the declaration of helsinki
    • edited by U. Schmidt and A. Frewer. Stuttgart: Franz Steiner Verlag
    • Lederer, S.E. 2005. Research without Borders: The Origins of the Declaration of Helsinki, in History and Theory of Human Experimentation, edited by U. Schmidt and A. Frewer. Stuttgart: Franz Steiner Verlag, 145.
    • (2005) History and Theory of Human Experimentation , pp. 145
    • Lederer, S.E.1
  • 29
    • 33645790533 scopus 로고    scopus 로고
    • Federal regulation of reb review of clinical trials: A modest but easy step towards an accountable reb structure in Canada
    • Lemmens, T. 2005. Federal Regulation of REB Review of Clinical Trials: A Modest but Easy Step Towards an Accountable REB Structure in Canada. Health Law Review, 13.
    • (2005) Health Law Review , pp. 13
    • Lemmens, T.1
  • 31
    • 0034574157 scopus 로고    scopus 로고
    • Ethics review for sale? Conflict of interest and commercial research review boards
    • Lemmens, T. and Freedman, B. 2000. Ethics Review for Sale? Conflict of Interest and Commercial Research Review Boards. The Milbank Quarterly, 78, 547.
    • (2000) The Milbank Quarterly , vol.78 , pp. 547
    • Lemmens, T.1    Freedman, B.2
  • 32
    • 35648976118 scopus 로고    scopus 로고
    • A new human genome sequence paves the way for individualized genomics
    • Levy, S. et al. 2007. A New Human Genome Sequence Paves the Way for Individualized Genomics. PLoS Biology, 5, e254.
    • (2007) PLoS Biology , vol.e254 , pp. 5
    • Levy, S.1
  • 33
    • 84900091789 scopus 로고    scopus 로고
    • Human genetic databanks: From consent to commercialization - An overview of current concerns and conundrums
    • edited by W. Horst Doelle and E.J. DaSilva
    • Luther, L. and Lemmens, T. 2007. Human Genetic Databanks: From Consent to Commercialization - An Overview of Current Concerns and Conundrums, in Biotechnology, Encyclopedia of Life Support Systems, edited by W. Horst Doelle and E.J. DaSilva.
    • (2007) Biotechnology, Encyclopedia of Life Support Systems
    • Luther, L.1    Lemmens, T.2
  • 34
    • 18044402401 scopus 로고    scopus 로고
    • Bermuda rules: Community spirit, with teeth
    • Marshall, E. 2001. Bermuda Rules: Community Spirit, With Teeth. Science, 291, 1192.
    • (2001) Science , vol.291 , pp. 1192
    • Marshall, E.1
  • 35
    • 33646000796 scopus 로고    scopus 로고
    • No longer de-identified
    • McGuire, AL. and Gibbs, RA. 2006. No Longer De-Identified. Science, 312, 370 371.
    • (2006) Science , vol.312 , Issue.370 , pp. 371
    • McGuire, A.L.1    Gibbs, R.A.2
  • 36
    • 57149085477 scopus 로고    scopus 로고
    • Ethical, legal, and social considerations in conducting the human microbiome project
    • McGuire, A.L. et al. 2008. Ethical, Legal, and Social Considerations in Conducting the Human Microbiome Project. Genome Research, 18, 1861.
    • (2008) Genome Research , vol.18 , pp. 1861
    • McGuire, A.L.1
  • 37
    • 84900293602 scopus 로고    scopus 로고
    • Institutional oversight of clinical trials and the drug approval process
    • Miller, P.B. 2006. Institutional Oversight of Clinical Trials and the Drug Approval Process. Osgoode Hall Law Journal, 44(4), 679-726.
    • (2006) Osgoode Hall Law Journal , vol.44 , Issue.4 , pp. 679-726
    • Miller, P.B.1
  • 38
    • 67651170519 scopus 로고    scopus 로고
    • Anonymous sperm donor traced on internet
    • Motluk, A. 2005. Anonymous Sperm Donor Traced on Internet. New Scientist, 2524, 6.
    • (2005) New Scientist , vol.2524 , pp. 6
    • Motluk, A.1
  • 39
    • 84900158303 scopus 로고    scopus 로고
    • National Council on Ethics in Human Research, Task Force for the Development of an Accreditation System for Human Research Protection Programs, Online: National Council on Ethics in Human Research, Available at, accessed 1 January 2009
    • National Council on Ethics in Human Research, Task Force for the Development of an Accreditation System for Human Research Protection Programs. 2006. Promoting Ethical Research with Humans. [Online: National Council on Ethics in Human Research] Available at: http://ncehr-cnerh.org/english/task_force [accessed 1 January 2009].
    • (2006) Promoting Ethical Research with Humans
  • 40
    • 0003568396 scopus 로고    scopus 로고
    • National Bioethics Advisory Commission, Online: National Bioethics Advisory Commission, Available at, accessed 29 December 2008
    • National Bioethics Advisory Commission. 1999. Research Involving Human Biological Materials. [Online: National Bioethics Advisory Commission] Available at: http://bioethics.georgetown.edu/nbac/hbm.pdf [accessed 29 December 2008].
    • (1999) Research Involving Human Biological Materials
  • 41
    • 84882016353 scopus 로고    scopus 로고
    • NIH, Online: National Institutes of Health, Available at, accessed 18 September 2008
    • NIH. 2008a. Background Fact Sheet on GWAS Policy Update. [Online: National Institutes of Health] Available at: http://grants.nih.gov/grants/gwas/background_ fact_sheet_20080828.pdf [accessed 18 September 2008].
    • (2008) Background Fact Sheet on GWAS Policy Update
  • 42
    • 80555151557 scopus 로고    scopus 로고
    • NIH, Online: National Institutes of Health, Available at, accessed 18 September 2008
    • NIH. 2008b. Modifications to Genome-Wide Association Studies (GWAS) Data Access. [Online: National Institutes of Health] Available at: http://grants.nih.gov/grants/gwas/data_sharing_policy_modifications_20080828.pdf [accessed 18 September 2008].
    • (2008) Modifications to Genome-Wide Association Studies (GWAS) Data Access
  • 43
    • 84900140248 scopus 로고    scopus 로고
    • On jim watson's apoe status: Genetic information is hard to hide
    • Online, Available at, accessed 1 January 2009
    • Nyholt, D.R., Yu, C.E. and Visscher, P.M. 2008. On Jim Watson's APOE Status: Genetic Information is Hard to Hide. European Journal of Human Genetics. [Online] Available at: http://www.nature.com/ejhg/journal/vaop/ncurrent/abs/ejhg2008198a.html [accessed 1 January 2009].
    • (2008) European Journal of Human Genetics
    • Nyholt, D.R.1    Yu, C.E.2    Visscher, P.M.3
  • 44
    • 84900114831 scopus 로고    scopus 로고
    • Ontario HIV Treatment Network, Online, Available at, accessed 24 March 2009
    • Ontario HIV Treatment Network. 2008. What is the OHTN Cohort Study? [Online] Available at: http://www.ohtn.on.ca/OHTNCohort.htm [accessed 24 March 2009].
    • (2008) What is the OHTN Cohort Study?
  • 45
    • 84871292252 scopus 로고    scopus 로고
    • Online, Available at, accessed 26 December 2008
    • Patientslikeme. [Online] Available at: www.patientslikeme.com [accessed 26 December 2008].
    • Patientslikeme
  • 46
    • 84900143166 scopus 로고    scopus 로고
    • Online, Available at, accessed 22 December 2008
    • Personal Genomics Project. [Online] Available at: http://www.personalgenomes.org/mission.html [accessed 22 December 2008].
    • Personal Genomics Project
  • 47
  • 48
    • 33644570695 scopus 로고    scopus 로고
    • The wolf in sheep's clothing: Informed consent forms as commercial contracts
    • edited by G. Árnason., S. Nordal and V. Árnason. Reykjavík: University of Iceland Press
    • Porter, G. 2004. The Wolf in Sheep's Clothing: Informed Consent Forms as Commercial Contracts, in Blood and Data, Ethical, Legal and Social Aspects of Human Genetic Databases, edited by G. Árnason., S. Nordal and V. Árnason. Reykjavík: University of Iceland Press, 85.
    • (2004) Blood and Data, Ethical, Legal and Social Aspects of Human Genetic Databases , pp. 85
    • Porter, G.1
  • 50
    • 41149177476 scopus 로고    scopus 로고
    • Ontario cancer research ethics board: Lessons learned from developing a multicenter regional institutional review board
    • Saginur, R. et al. 2008. Ontario Cancer Research Ethics Board: Lessons Learned From Developing a Multicenter Regional Institutional Review Board. Journal of Clinical Oncology, 26, 1479.
    • (2008) Journal of Clinical Oncology , vol.26 , pp. 1479
    • Saginur, R.1
  • 52
    • 84900191798 scopus 로고    scopus 로고
    • Online: Technology Review, Available at
    • Singer, E. 2006. The Personal Genome Project. [Online: Technology Review] Available at: http://www.technologyreview.com/BioTech/wtr_16169,259,p1.html.
    • (2006) The Personal Genome Project
    • Singer, E.1
  • 54
  • 55
    • 84900242418 scopus 로고    scopus 로고
    • Online: National Human Genome Research Institute, Available at
    • The ENCODE Project: ENCylopedia of DNA Elements. [Online: National Human Genome Research Institute] Available at: http://128.231.210.112/10005107#1.
    • The ENCODE Project: ENCylopedia of DNA Elements
  • 56
    • 84900219059 scopus 로고    scopus 로고
    • Online: Center for Biomolecular Science and Engineering, Available at, accessed 29 December 2008
    • The Human Genome Project Race. [Online: Center for Biomolecular Science and Engineering] Available at: http://www.cbse.ucsc.edu/research/research_hgprace.shtml [accessed 29 December 2008].
    • The Human Genome Project Race
  • 58
    • 42249084088 scopus 로고    scopus 로고
    • James watson's genome sequenced at high speed
    • Wadman, M. 2008. James Watson's Genome Sequenced at High Speed. Nature, 452 (7189), 788.
    • (2008) Nature , vol.452 , Issue.7189 , pp. 788
    • Wadman, M.1
  • 59
    • 42249087308 scopus 로고    scopus 로고
    • The complete genome of an individual by massively parallel dna sequencing
    • Wheeler, D.A. et al. 2008. The Complete Genome of an Individual by Massively Parallel DNA Sequencing. Nature, 452, 872.
    • (2008) Nature , vol.452 , pp. 872
    • Wheeler, D.A.1
  • 61
    • 84900127116 scopus 로고    scopus 로고
    • Long journey home just the beginning
    • Wiwchar, D. 2005. Long Journey Home Just the Beginning. Windspeaker, 22, 13.
    • (2005) Windspeaker , vol.22 , pp. 13
    • Wiwchar, D.1
  • 63
    • 0028809482 scopus 로고
    • Informed consent for genetic research on stored tissue sample
    • Wright Clayton, E. et al. 1995. Informed Consent for Genetic Research on Stored Tissue Sample. Journal of American Medical Association, 274 (22), 1786.
    • (1995) Journal of American Medical Association , vol.274 , Issue.22 , pp. 1786
    • Wright Clayton, E.1
  • 66
    • 0347516317 scopus 로고
    • (c. F-27), Ottawa, Ontario: CG
    • Food and Drugs Act 1985. (c. F-27), Ottawa, Ontario: CG.
    • (1985) Food and Drugs Act
  • 67
    • 20344365457 scopus 로고
    • SI 1985/c. 870, Ottawa, Ontario: CG
    • Food and Drug Regulations 1985. SI 1985/c. 870, Ottawa, Ontario: CG.
    • (1985) Food and Drug Regulations
  • 68
    • 84884256865 scopus 로고    scopus 로고
    • (c. H-5), Alberta: AG
    • Health Information Act 2000. (c. H-5), Alberta: AG.
    • (2000) Health Information Act
  • 69
    • 70949086724 scopus 로고    scopus 로고
    • (c. H-1.2.), St. John, Newfoundland and Labrador: LG
    • Health Research Ethics Authority Act 2006. (c. H-1.2.), St. John, Newfoundland and Labrador: LG.
    • (2006) Health Research Ethics Authority Act
  • 72
    • 0346637117 scopus 로고
    • (c.P-21), Ottawa, Ontario: CG
    • Privacy Act 1985. (c.P-21), Ottawa, Ontario: CG.
    • (1985) Privacy Act
  • 78
    • 3242677330 scopus 로고
    • 2 S.C.R. 880
    • Reibl v. Hughes (1980) 2 S.C.R. 880.
    • (1980) Reibl V. Hughes
  • 80
    • 84873733423 scopus 로고
    • A.Q. No. 312
    • Weiss v. Solomon [1989] A.Q. No. 312.
    • (1989) Weiss V. Solomon


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.