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Volumn 130, Issue 3, 2011, Pages 347-356

Reflexive Governance in biobanking: On the value of policy led approaches and the need to recognise the limits of law

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; BIOBANK; HEALTH CARE FACILITY; HEALTH CARE POLICY; HEALTH CARE QUALITY; MEDICAL DECISION MAKING; MEDICAL PRACTICE; MEDICAL RESEARCH; PRIORITY JOURNAL; ETHICS; LEGAL ASPECT; MANAGEMENT; PROFESSIONAL PRACTICE; QUALITY CONTROL; SOCIAL BEHAVIOR; SOCIAL CONTROL; UNITED KINGDOM; UNITED STATES;

EID: 80053306411     PISSN: 03406717     EISSN: 14321203     Source Type: Journal    
DOI: 10.1007/s00439-011-1066-x     Document Type: Article
Times cited : (69)

References (48)
  • 2
    • 4744364738 scopus 로고    scopus 로고
    • A conceptual framework for genetic policy: Comparing the medical, public health and fundamental rights models
    • Andrews L (2001) A conceptual framework for genetic policy: comparing the medical, public health and fundamental rights models. Wash Univ Law Q 79:221-285
    • (2001) Wash Univ Law Q , vol.79 , pp. 221-285
    • Andrews, L.1
  • 3
    • 14144254552 scopus 로고    scopus 로고
    • The ethics and governance of medical research: What does regulation have to do with morality?
    • Ashcroft RE (2003) The ethics and governance of medical research: what does regulation have to do with morality? New Rev Bioethics 1(1):41-58
    • (2003) New Rev Bioethics , vol.1 , Issue.1 , pp. 41-58
    • Ashcroft, R.E.1
  • 4
    • 80054762487 scopus 로고    scopus 로고
    • Accessed 25 Apr 2011
    • UK Biobank (2011) www.ukbiobank.ac.uk. Accessed 25 Apr 2011
    • (2011)
  • 5
    • 80054770041 scopus 로고    scopus 로고
    • Last visited 25 April 2011
    • Biobanking and Biomolecular Resources Research Infrastructure (BBMRI). www.bbmri.eu. Last visited 25 April 2011
  • 7
    • 34548070120 scopus 로고    scopus 로고
    • Balancing powers: Examining models of biobank governance
    • Cutter AM, Wilson S, Chadwick R (2004) Balancing powers: examining models of biobank governance. J Intern Biotech Law 1(5):187-192
    • (2004) J Intern Biotech Law , vol.1 , Issue.5 , pp. 187-192
    • Cutter, A.M.1    Wilson, S.2    Chadwick, R.3
  • 9
    • 9944249423 scopus 로고    scopus 로고
    • An analysis of the icelandic supreme court judgement on the health sector database act
    • Gertz R (2004) An analysis of the Icelandic Supreme Court judgement on the Health Sector Database Act. SCRIPTed 1(2):241-258
    • (2004) SCRIPTed , vol.1 , Issue.2 , pp. 241-258
    • Gertz, R.1
  • 10
    • 37349033561 scopus 로고    scopus 로고
    • Are UK genetic databases governed adequately?
    • Gibbons SMC (2007) Are UK genetic databases governed adequately? Leg Stud 27(2):312-342
    • (2007) Leg Stud , vol.27 , Issue.2 , pp. 312-342
    • Gibbons, S.M.C.1
  • 11
    • 77949693630 scopus 로고    scopus 로고
    • Biobank governance in the post-genomic age
    • Gottweis H, Lauss G (2010) Biobank governance in the post-genomic age. Pers Med 7(2):187-195
    • (2010) Pers Med , vol.7 , Issue.2 , pp. 187-195
    • Gottweis, H.1    Lauss, G.2
  • 12
    • 34548082286 scopus 로고    scopus 로고
    • Biobank governance: Trends and perspectives
    • DOI 10.1159/000104446
    • Gottweis H, Zatioukal K (2007) Biobank governance: trends and perspectives. Pathobiology 74(4):206-211 (Pubitemid 47294501)
    • (2007) Pathobiology , vol.74 , Issue.4 , pp. 206-211
    • Gottweis, H.1    Zatloukal, K.2
  • 13
    • 50049127977 scopus 로고    scopus 로고
    • Innovation policy: Not just jumbo shrimp
    • Guston DH (2008) Innovation policy: not just jumbo shrimp. Nature 454:940-941
    • (2008) Nature , vol.454 , pp. 940-941
    • Guston, D.H.1
  • 14
    • 79551637615 scopus 로고    scopus 로고
    • Can the governance of a population genetic data bank effect recruitment? Evidence from the public consultation of Generation Scotland
    • Haddow G, Cunningham-Burley S, Murray L (2011) Can the governance of a population genetic data bank effect recruitment? Evidence from the public consultation of Generation Scotland. Public Underst Sci 20(1):117-129
    • (2011) Public Underst Sci , vol.20 , Issue.1 , pp. 117-129
    • Haddow, G.1    Cunningham-Burley, S.2    Murray, L.3
  • 15
    • 56349107031 scopus 로고    scopus 로고
    • Bioethical analysis of the results: How well do laws and regulations address people's concerns?
    • Häyry M, Chadwick R, Árnason V, Árnason G (eds), Cambridge University Press, Cambridge, at 252
    • Häyry M, Takala T (2007) Bioethical analysis of the results: how well do laws and regulations address people's concerns? In: Häyry M, Chadwick R, Árnason V, Árnason G (eds) The ethics and governance of human genetic databases, Cambridge University Press, Cambridge, pp 249-256, at 252
    • (2007) The Ethics and Governance of Human Genetic Databases , pp. 249-256
    • Häyry, M.1    Takala, T.2
  • 16
    • 51049101913 scopus 로고    scopus 로고
    • Enacting reflexive governance: The politics of Dutch transitions to sustainability
    • Hendriks CM, Grin J (2007) Enacting reflexive governance: the politics of Dutch transitions to sustainability. J Environ Policy Plan 9(4):333-350
    • (2007) J Environ Policy Plan , vol.9 , Issue.4 , pp. 333-350
    • Hendriks, C.M.1    Grin, J.2
  • 17
    • 80054775376 scopus 로고    scopus 로고
    • Me, myself, I-against narcissism in the governance of genetic information
    • Widdows H, Mullen C (eds). Cambridge University Press, Cambridge
    • Holm S (2009) Me, myself, I-against narcissism in the governance of genetic information. In: Widdows H, Mullen C (eds) The governance of genetic information: who decides?. Cambridge University Press, Cambridge, pp 37-50
    • (2009) The Governance of Genetic Information: Who Decides? , pp. 37-50
    • Holm, S.1
  • 18
    • 80054718324 scopus 로고    scopus 로고
    • Genomic medicine
    • House of Lords Science and Technology Committee, para 6.15
    • House of Lords Science and Technology Committee (2009) Genomic Medicine. Second Report of Session 2008-2009, para 6.15
    • (2009) Second Report of Session 2008-2009
  • 19
    • 79952927761 scopus 로고    scopus 로고
    • Involving publics in biobank governance: Moving beyond existing approaches
    • Widdows H, Mullen C (eds). Cambridge University Press, Cambridge
    • Hunter KG, Laurie G (2009) Involving publics in biobank governance: moving beyond existing approaches. In: Widdows H, Mullen C (eds) The governance of genetic information: who decides?. Cambridge University Press, Cambridge, pp 151-177
    • (2009) The Governance of Genetic Information: Who Decides? , pp. 151-177
    • Hunter, K.G.1    Laurie, G.2
  • 20
    • 69949123490 scopus 로고    scopus 로고
    • Consent for biobank tissue in somaticcell nuclear transfer
    • Jones D, MacKellar C (2009) Consent for biobank tissue in somaticcell nuclear transfer. Lancet 374(9693):861-863
    • (2009) Lancet , vol.374 , Issue.9693 , pp. 861-863
    • Jones, D.1    MacKellar, C.2
  • 21
    • 80052277457 scopus 로고    scopus 로고
    • Towards anticipatory governance: The experience of nanotechnology
    • doi:10.1007/978-90-481-2835-1-12
    • Karinen R, Guston DH (2010) Towards anticipatory governance: the experience of nanotechnology. Sociol Sci Yearb 27(4):217-232. doi:10.1007/978-90-481-2835-1-12
    • (2010) Sociol Sci Yearb , vol.27 , Issue.4 , pp. 217-232
    • Karinen, R.1    Guston, D.H.2
  • 22
    • 31344467157 scopus 로고    scopus 로고
    • Do we need a uniform regulatory system for biobanks across Europe?
    • DOI 10.1038/sj.ejhg.5201530, PII 5201530
    • Kaye J (2006) Do we need a uniform regulatory system for biobanks across Europe? Euro J Hum Genet 14:245-248. doi:10.1038/sj.ejhg.5201530 (Pubitemid 43135869)
    • (2006) European Journal of Human Genetics , vol.14 , Issue.2 , pp. 245-248
    • Kaye, J.1
  • 23
    • 67349216919 scopus 로고    scopus 로고
    • Genomics and policymaking: From static models to complex systems?
    • Knoppers BM (2009a) Genomics and policymaking: from static models to complex systems? Hum Genet 125:375-379
    • (2009) Hum Genet , vol.125 , pp. 375-379
    • Knoppers, B.M.1
  • 24
    • 67349251737 scopus 로고    scopus 로고
    • Challenges to ethics review in health research
    • Knoppers BM (2009b) Challenges to ethics review in health research. Health Law Rev 17(2-3):47-52
    • (2009) Health Law Rev , vol.17 , Issue.2-3 , pp. 47-52
    • Knoppers, B.M.1
  • 25
    • 70449419858 scopus 로고    scopus 로고
    • The role of the UK biobank ethics and governance council
    • Laurie G (2009) The role of the UK Biobank Ethics and Governance Council. Lancet 374(9702):1676
    • (2009) Lancet , vol.374 , Issue.9702 , pp. 1676
    • Laurie, G.1
  • 26
    • 78649642265 scopus 로고    scopus 로고
    • The role of values and interests in the governance of the life sciences: Learning lessons from the "ethics?" approach of UK Biobank
    • Lyall C, Papaioannou T, Smith J (eds). Ashgate, Farnham
    • Laurie G, Bruce A, Lyall C (2009) The role of values and interests in the governance of the life sciences: learning lessons from the "Ethics?" approach of UK Biobank. In: Lyall C, Papaioannou T, Smith J (eds) The limits to governance: the challenges of policymaking for the new life sciences. Ashgate, Farnham, pp 51-77
    • (2009) The Limits to Governance: The Challenges of Policymaking for the New Life Sciences , pp. 51-77
    • Laurie, G.1    Bruce, A.2    Lyall, C.3
  • 27
    • 79951802866 scopus 로고    scopus 로고
    • Managing access to biobanks: How can we reconcile individual privacy and public interests in genetic research?
    • Laurie G et al (2010) Managing access to biobanks: how can we reconcile individual privacy and public interests in genetic research? Med Law Int 10(4):315-337
    • (2010) Med Law Int , vol.10 , Issue.4 , pp. 315-337
    • Laurie, G.1
  • 28
    • 80054725781 scopus 로고    scopus 로고
    • Renewing the theory of public interest: The quest for a reflexive and learning-based approach to governance
    • de Schutter O, Lenoble J (eds). Hart Publishing, Oxford
    • Lenoble J, Maesschalck M (2010) Renewing the theory of public interest: the quest for a reflexive and learning-based approach to governance. In: de Schutter O, Lenoble J (eds) Reflexive governance: redefining the public interest in a pluralistic world. Hart Publishing, Oxford, pp 3-21
    • (2010) Reflexive Governance: Redefining the Public Interest in A Pluralistic World , pp. 3-21
    • Lenoble, J.1    Maesschalck, M.2
  • 29
    • 34547779363 scopus 로고    scopus 로고
    • Identifiability in genomic research
    • DOI 10.1126/science.1147699
    • Lowrance WW, Collins FS (2007) Identifiability in genomic research. Science 317:600-602 (Pubitemid 47240914)
    • (2007) Science , vol.317 , Issue.5838 , pp. 600-602
    • Lowrance, W.W.1    Collins, F.S.2
  • 30
    • 77951468117 scopus 로고    scopus 로고
    • The value of using top-down and bottom-up approaches for building trust and transparency in biobanking
    • Meslin EM (2010) The value of using top-down and bottom-up approaches for building trust and transparency in biobanking. Public Health Genomics 13(4):207-214
    • (2010) Public Health Genomics , vol.13 , Issue.4 , pp. 207-214
    • Meslin, E.M.1
  • 31
    • 79954624835 scopus 로고    scopus 로고
    • Genomics, biobanks, and the trade-secret model
    • Mitchell R et al (2011) Genomics, biobanks, and the trade-secret model. Science 332(6027):309-310
    • (2011) Science , vol.332 , Issue.6027 , pp. 309-310
    • Mitchell, R.1
  • 32
    • 77951473507 scopus 로고    scopus 로고
    • Structuring public engagement for effective input in policy development on human tissue biobanking
    • O'Doherty KC, Hawkins A (2010) Structuring public engagement for effective input in policy development on human tissue biobanking. Public Health Genomics 13:197-206
    • (2010) Public Health Genomics , vol.13 , pp. 197-206
    • O'doherty, K.C.1    Hawkins, A.2
  • 33
    • 84900052359 scopus 로고    scopus 로고
    • Developing an appropriate consent model for biobanks: In defence of 'broad' consent
    • Kaye J, Stranger M (eds). Ashgate, Farnham
    • Otlowski M (2009) Developing an appropriate consent model for biobanks: in defence of 'broad' consent. In: Kaye J, Stranger M (eds) Principles and practice in biobank governance. Ashgate, Farnham, pp 79-92
    • (2009) Principles and Practice in Biobank Governance , pp. 79-92
    • Otlowski, M.1
  • 34
    • 80054724972 scopus 로고    scopus 로고
    • Last visited 25 April 2011
    • Public Population Project in Genomics (P3G) (2011) www.p3g.org. Last visited 25 April 2011
    • (2011)
  • 35
    • 79951781571 scopus 로고    scopus 로고
    • From research exemption to research norm: Recognizing an alternative to consent for large scale biobank research
    • Ruyter KW et al (2010) From research exemption to research norm: recognizing an alternative to consent for large scale biobank research. Med Law Int 10(4):287-313
    • (2010) Med Law Int , vol.10 , Issue.4 , pp. 287-313
    • Ruyter, K.W.1
  • 37
    • 80053914889 scopus 로고    scopus 로고
    • Safeguarding donors' personal rights and biobank autonomy in biobank networks: The CRIP privacy regime
    • doi:10.1007/s10561-010-9190-8
    • Schröder C, Heidtke KR, Zacherl N, Zatloukal K, Taupitz J (2010) Safeguarding donors' personal rights and biobank autonomy in biobank networks: the CRIP privacy regime. Cell Tissue Bank. doi:10.1007/s10561-010-9190-8
    • (2010) Cell Tissue Bank
    • Schröder, C.1    Heidtke, K.R.2    Zacherl, N.3    Zatloukal, K.4    Taupitz, J.5
  • 38
    • 77954516111 scopus 로고    scopus 로고
    • Inter- and intra-biobank networks: Classification of biobanks
    • Shickle D, Griffin M, El-Arifi K (2010) Inter- and intra-biobank networks: classification of biobanks. Pathobiology 77(4):181-190
    • (2010) Pathobiology , vol.77 , Issue.4 , pp. 181-190
    • Shickle, D.1    Griffin, M.2    El-Arifi, K.3
  • 39
    • 57149086867 scopus 로고    scopus 로고
    • Human genetic databases in Australia: Indications of inconsistency and confusion
    • Stranger M, Bell E, Nicol D, Otlowski M, Chalmers D (2008) Human genetic databases in Australia: indications of inconsistency and confusion. New Genet Soc 27(4):311-321
    • (2008) New Genet Soc , vol.27 , Issue.4 , pp. 311-321
    • Stranger, M.1    Bell, E.2    Nicol, D.3    Otlowski, M.4    Chalmers, D.5
  • 40
    • 56349091024 scopus 로고    scopus 로고
    • Trust
    • Häyry M, Chadwick R, Árnason V, Árnason G (eds). Cambridge University Press, Cambridge
    • Sutrop M (2007) Trust. In: Häyry M, Chadwick R, Árnason V, Árnason G (eds) The ethics and governance of human genetic databases. Cambridge University Press, Cambridge, pp 190-198
    • (2007) The Ethics and Governance of Human Genetic Databases , pp. 190-198
    • Sutrop, M.1
  • 41
    • 79951806670 scopus 로고    scopus 로고
    • Issues in protecting privacy in medical research using genetic information and biobanking: The PRIVILEGED project
    • Taylor MJ, Townend D (2010) Issues in protecting privacy in medical research using genetic information and biobanking: the PRIVILEGED project. Med Law Int 10(4):253-268
    • (2010) Med Law Int , vol.10 , Issue.4 , pp. 253-268
    • Taylor, M.J.1    Townend, D.2
  • 42
    • 80054756735 scopus 로고    scopus 로고
    • From collaborative to genetic governance: The example of healthcare services in England
    • de Schutter O, Lenoble J (eds). Hart Publishing, Oxford
    • Vincent-Jones P, Mullen C (2010) From collaborative to genetic governance: the example of healthcare services in England. In: de Schutter O, Lenoble J (eds) Reflexive governance: redefining the public interest in a pluralistic world. Hart Publishing, Oxford, pp 147-178
    • (2010) Reflexive Governance: Redefining the Public Interest in A Pluralistic World , pp. 147-178
    • Vincent-Jones, P.1    Mullen, C.2
  • 43
    • 63149108734 scopus 로고    scopus 로고
    • Governance mechanisms and population biobanks: Building a framework for trust
    • Wallace S, Bédard K, Kent A, Knoppers BM (2008) Governance mechanisms and population biobanks: building a framework for trust. GenEdit 6:1-11. http://www.humgen.umontreal.ca/int/GE/en/2008-2.pdf
    • (2008) GenEdit , vol.6 , pp. 1-11
    • Wallace, S.1    Bédard, K.2    Kent, A.3    Knoppers, B.M.4
  • 44
    • 74349083924 scopus 로고    scopus 로고
    • Compressed foresight and narrative bias: Pitfalls in assessing high technology futures
    • Williams R (2006) Compressed foresight and narrative bias: pitfalls in assessing high technology futures. Sci Cult 15(4):327-348
    • (2006) Sci Cult , vol.15 , Issue.4 , pp. 327-348
    • Williams, R.1
  • 45
    • 34547950328 scopus 로고    scopus 로고
    • Partnership in UK Biobank: A third way for genomic property?
    • Winickoff D (2007) Partnership in UK Biobank: a third way for genomic property? Journal of Law. Med Ethics 35(3):440-456
    • (2007) Journal of Law. Med Ethics , vol.35 , Issue.3 , pp. 440-456
    • Winickoff, D.1
  • 46
    • 77949681251 scopus 로고    scopus 로고
    • From benefit sharing to power sharing: Partnership governance in population genomics research
    • Kaye J, Stranger M (eds). Ashgate, Franham
    • Winickoff D (2009) From benefit sharing to power sharing: partnership governance in population genomics research. In: Kaye J, Stranger M (eds) Principles and practice in biobank governance. Ashgate, Franham, pp 53-66
    • (2009) Principles and Practice in Biobank Governance , pp. 53-66
    • Winickoff, D.1
  • 47
    • 10844286071 scopus 로고
    • Uncertainty and environmental learning: Reconceiving science and policy in the preventive paradigm
    • Wynne B (1992) Uncertainty and environmental learning: reconceiving science and policy in the preventive paradigm. Glob Environ Change 2(2):111-127
    • (1992) Glob Environ Change , vol.2 , Issue.2 , pp. 111-127
    • Wynne, B.1
  • 48
    • 65249103277 scopus 로고    scopus 로고
    • Transforming the culture of biomedical research from compliance to trustworthiness: Insights from nonmedical sectors
    • Yarborough M, Fryer-Edwards K, Geller G, Sharp RR (2009) Transforming the culture of biomedical research from compliance to trustworthiness: insights from nonmedical sectors. Acad Med 84(4):472-477
    • (2009) Acad Med , vol.84 , Issue.4 , pp. 472-477
    • Yarborough, M.1    Fryer-Edwards, K.2    Geller, G.3    Sharp, R.R.4


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