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Volumn 75, Issue 9, 2012, Pages 1604-1611

Involving citizens in the ethics of biobank research: Informing institutional policy through structured public deliberation

Author keywords

Biobanks; Biospecimen; British Columbia; Canada; Consent; Privacy; Public deliberation

Indexed keywords

ETHICS; INNOVATION; METHODOLOGY; PRIVATE SECTOR;

EID: 84865653047     PISSN: 02779536     EISSN: 18735347     Source Type: Journal    
DOI: 10.1016/j.socscimed.2012.06.026     Document Type: Article
Times cited : (83)

References (31)
  • 1
    • 45149084128 scopus 로고    scopus 로고
    • Biobanking in BC: enhancing discussions of the future of personalized medicine through deliberative public engagement
    • Burgess M.M., O'Doherty K.C., Secko D.M. Biobanking in BC: enhancing discussions of the future of personalized medicine through deliberative public engagement. Personalized Medicine 2008, 5(3):285-296.
    • (2008) Personalized Medicine , vol.5 , Issue.3 , pp. 285-296
    • Burgess, M.M.1    O'Doherty, K.C.2    Secko, D.M.3
  • 2
    • 77951494621 scopus 로고    scopus 로고
    • Democratic deficit and the politics of "informed and inclusive" consultation
    • UBC Press, Vancouver, BC, E. Einsiedel, R. Parker (Eds.)
    • Burgess M.M., Tansey J. Democratic deficit and the politics of "informed and inclusive" consultation. Hindsight to foresight in emerging technologies 2008, 275-288. UBC Press, Vancouver, BC. E. Einsiedel, R. Parker (Eds.).
    • (2008) Hindsight to foresight in emerging technologies , pp. 275-288
    • Burgess, M.M.1    Tansey, J.2
  • 3
    • 84865656389 scopus 로고    scopus 로고
    • Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, December
    • Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, December 2010.
    • (2010)
  • 4
    • 0000083251 scopus 로고    scopus 로고
    • Five arguments for increasing public participation in making science policy
    • Foltz F. Five arguments for increasing public participation in making science policy. Bulletin of Science, Technology & Society 1999, 19(2):117-127.
    • (1999) Bulletin of Science, Technology & Society , vol.19 , Issue.2 , pp. 117-127
    • Foltz, F.1
  • 5
    • 68349137220 scopus 로고    scopus 로고
    • Public Agenda Occasional Paper Series, (1), Retrieved from
    • Friedman W. Reframing "framing" 2007, Public Agenda Occasional Paper Series, (1), Retrieved from. http://www.publicagenda.org/files/pdf/Reframing%2520Framing_0.pdf.
    • (2007) Reframing "framing"
    • Friedman, W.1
  • 7
    • 61449186572 scopus 로고    scopus 로고
    • Who's minding the shop? The role of Canadian research ethics boards in the creation and uses of registries and biobanks
    • Gibson E., Brazil K., Coughlin M.D., Emerson C., Fournier F., Schwartz L., et al. Who's minding the shop? The role of Canadian research ethics boards in the creation and uses of registries and biobanks. BMC Medical Ethics 2008, 9:17.
    • (2008) BMC Medical Ethics , vol.9 , pp. 17
    • Gibson, E.1    Brazil, K.2    Coughlin, M.D.3    Emerson, C.4    Fournier, F.5    Schwartz, L.6
  • 8
    • 34250650978 scopus 로고    scopus 로고
    • Community engagement in genetic research: results of the first public consultation for the Quebec CARTaGENE project
    • Godard B., Marshall J., Laberge C. Community engagement in genetic research: results of the first public consultation for the Quebec CARTaGENE project. Community Genetics 2007, 10:147-158.
    • (2007) Community Genetics , vol.10 , pp. 147-158
    • Godard, B.1    Marshall, J.2    Laberge, C.3
  • 9
    • 33646682159 scopus 로고    scopus 로고
    • Deliberative impacts: the macro-political uptake of mini-publics
    • Goodin R.E., Dryzek J. Deliberative impacts: the macro-political uptake of mini-publics. Politics and Society 2006, 34:219-244.
    • (2006) Politics and Society , vol.34 , pp. 219-244
    • Goodin, R.E.1    Dryzek, J.2
  • 10
    • 0037239205 scopus 로고    scopus 로고
    • Technology theory and deliberative democracy
    • Hamlett P.W. Technology theory and deliberative democracy. Science, Technology, & Human Values 2003, 28(1):112-140.
    • (2003) Science, Technology, & Human Values , vol.28 , Issue.1 , pp. 112-140
    • Hamlett, P.W.1
  • 14
    • 0005969828 scopus 로고    scopus 로고
    • Constructing the scientific citizen: science and democracy in the biosciences
    • Irwin A. Constructing the scientific citizen: science and democracy in the biosciences. Public Understanding of Science 2001, 10(1):1-18.
    • (2001) Public Understanding of Science , vol.10 , Issue.1 , pp. 1-18
    • Irwin, A.1
  • 15
    • 2942547255 scopus 로고    scopus 로고
    • Science and citizenship: a new synergy
    • Jasanoff S. Science and citizenship: a new synergy. Science and Public Policy 2004, 31:90-94.
    • (2004) Science and Public Policy , vol.31 , pp. 90-94
    • Jasanoff, S.1
  • 16
    • 77749283114 scopus 로고    scopus 로고
    • Recruiting for representation in public deliberation on the ethics of biobanks
    • Longstaff H., Burgess M.M. Recruiting for representation in public deliberation on the ethics of biobanks. Public Understanding of Science 2010, 19(2):212-224.
    • (2010) Public Understanding of Science , vol.19 , Issue.2 , pp. 212-224
    • Longstaff, H.1    Burgess, M.M.2
  • 17
    • 57149115791 scopus 로고    scopus 로고
    • The, M.C.P.C.A.G Community consultation and communication for a population-based DNA biobank: the Marshfield clinic personalized medicine research project
    • McCarty C.A., Chapman-Stone D., Derfus T., Giampietro P.F., Fost N., the, M.C.P.C.A.G Community consultation and communication for a population-based DNA biobank: the Marshfield clinic personalized medicine research project. American Journal of Medical Genetics Part A 2008, 146A(23):3026-3033.
    • (2008) American Journal of Medical Genetics Part A , vol.146 A , Issue.23 , pp. 3026-3033
    • McCarty, C.A.1    Chapman-Stone, D.2    Derfus, T.3    Giampietro, P.F.4    Fost, N.5
  • 18
    • 38549085235 scopus 로고    scopus 로고
    • Research ethics and the challenge of whole-genome sequencing
    • McGuire A.L., Caulfield T., Cho M.K. Research ethics and the challenge of whole-genome sequencing. Nature Reviews Genetics 2008, 9(2):152-156.
    • (2008) Nature Reviews Genetics , vol.9 , Issue.2 , pp. 152-156
    • McGuire, A.L.1    Caulfield, T.2    Cho, M.K.3
  • 19
    • 80455132502 scopus 로고    scopus 로고
    • Deliberating future issues: minipublics and salmon genomics
    • Article 5
    • MacKenzie M.K., O'Doherty K.C. Deliberating future issues: minipublics and salmon genomics. Journal of Public Deliberation 2011, 7(1). Article 5.
    • (2011) Journal of Public Deliberation , vol.7 , Issue.1
    • MacKenzie, M.K.1    O'Doherty, K.C.2
  • 20
    • 67449097690 scopus 로고    scopus 로고
    • Engaging the public on biobanks: outcomes of the BC biobank deliberation
    • O'Doherty K.C., Burgess M.M. Engaging the public on biobanks: outcomes of the BC biobank deliberation. Public Health Genomics 2009, 12(4):203-215.
    • (2009) Public Health Genomics , vol.12 , Issue.4 , pp. 203-215
    • O'Doherty, K.C.1    Burgess, M.M.2
  • 21
    • 77954141462 scopus 로고    scopus 로고
    • Subject positioning and deliberative democracy: understanding social processes underlying deliberation
    • O'Doherty K.C., Davidson H.J. Subject positioning and deliberative democracy: understanding social processes underlying deliberation. Journal for the Theory of Social Behaviour 2010, 40(1):224-245.
    • (2010) Journal for the Theory of Social Behaviour , vol.40 , Issue.1 , pp. 224-245
    • O'Doherty, K.C.1    Davidson, H.J.2
  • 22
    • 77951473507 scopus 로고    scopus 로고
    • Structuring public engagement for effective input in policy development on human tissue biobanking
    • O'Doherty K.C., Hawkins A. Structuring public engagement for effective input in policy development on human tissue biobanking. Public Health Genomics 2010, 13(4):197-206.
    • (2010) Public Health Genomics , vol.13 , Issue.4 , pp. 197-206
    • O'Doherty, K.C.1    Hawkins, A.2
  • 23
    • 84856859316 scopus 로고    scopus 로고
    • Managing the introduction of biobanks to potential participants: lessons from a deliberative public forum
    • O'Doherty K.C., Ibrahim T., Hawkins A.K., Burgess M.M., Watson P.H. Managing the introduction of biobanks to potential participants: lessons from a deliberative public forum. Biopreservation and Biobanking 2012, 10(1):12-21.
    • (2012) Biopreservation and Biobanking , vol.10 , Issue.1 , pp. 12-21
    • O'Doherty, K.C.1    Ibrahim, T.2    Hawkins, A.K.3    Burgess, M.M.4    Watson, P.H.5
  • 24
    • 53149117252 scopus 로고    scopus 로고
    • Biobanks' "engagements": engendering trust or engineering consent?
    • Petersen A. Biobanks' "engagements": engendering trust or engineering consent?. Genomics, Society and Policy 2007, 3(1):31-43.
    • (2007) Genomics, Society and Policy , vol.3 , Issue.1 , pp. 31-43
    • Petersen, A.1
  • 25
    • 79952462459 scopus 로고    scopus 로고
    • Genetic research and culture: where does the offense lie?
    • Blackwell, J.O. Young, C.G. Brunke (Eds.)
    • Pullman D., Arbour L. Genetic research and culture: where does the offense lie?. The ethics of cultural appropriation 2009, 115-139. Blackwell. J.O. Young, C.G. Brunke (Eds.).
    • (2009) The ethics of cultural appropriation , pp. 115-139
    • Pullman, D.1    Arbour, L.2
  • 26
    • 17944366421 scopus 로고    scopus 로고
    • Expanding the ethical analysis of biobanks
    • Rothstein M.A. Expanding the ethical analysis of biobanks. Journal of Law, Medicine, & Ethics 2005, 33(1):89-101.
    • (2005) Journal of Law, Medicine, & Ethics , vol.33 , Issue.1 , pp. 89-101
    • Rothstein, M.A.1
  • 27
    • 34250621473 scopus 로고    scopus 로고
    • International HapMap Consortium: community engagement and informed consent in the international HapMap project
    • Rotimi C.L.M., Matsuda I., Zeng C., Zhang H., Adebamowo C., Ajayi I., et al. International HapMap Consortium: community engagement and informed consent in the international HapMap project. Community Genetics 2007, 10:186-198.
    • (2007) Community Genetics , vol.10 , pp. 186-198
    • Rotimi, C.L.M.1    Matsuda, I.2    Zeng, C.3    Zhang, H.4    Adebamowo, C.5    Ajayi, I.6
  • 28
    • 59649110565 scopus 로고    scopus 로고
    • Informed consent in biobank research: a deliberative approach to the debate
    • Secko D.M., Preto N., Niemeyer S., Burgess M.M. Informed consent in biobank research: a deliberative approach to the debate. Social Science & Medicine 2009, 68(4):781-789.
    • (2009) Social Science & Medicine , vol.68 , Issue.4 , pp. 781-789
    • Secko, D.M.1    Preto, N.2    Niemeyer, S.3    Burgess, M.M.4
  • 29
    • 79960276983 scopus 로고    scopus 로고
    • Stock options, tax credits or employment contracts please! The value of deliberative public disagreement about human tissue donation
    • Walmsley H.L. Stock options, tax credits or employment contracts please! The value of deliberative public disagreement about human tissue donation. Social Science & Medicine 2011, 73(2):209-221.
    • (2011) Social Science & Medicine , vol.73 , Issue.2 , pp. 209-221
    • Walmsley, H.L.1
  • 31
    • 0004146490 scopus 로고    scopus 로고
    • Oxford University Press, Oxford and New York
    • Young I.M. Inclusion and democracy 2000, Oxford University Press, Oxford and New York.
    • (2000) Inclusion and democracy
    • Young, I.M.1


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.