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Volumn 21, Issue 9, 2013, Pages 897-902

Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem

Author keywords

biobank; broad consent; dynamic consent; ethics; research participation

Indexed keywords

ARTICLE; BENEFICENCE; BIOBANK RESEARCH; BROAD CONSENT; DECISION MAKING; DONOR; DYNAMIC CONSENT; E-MAIL; HUMAN; INCIDENTAL FINDING; INFORMATION; INFORMED CONSENT; INTERMETHOD COMPARISON; KNOWLEDGE; MEDICAL ETHICS; MEDICAL RESEARCH; MEDICALIZATION; PERSONAL AUTONOMY; PRIORITY JOURNAL; PUBLICATION; RESEARCH; RESEARCH ETHICS; THERAPEUTIC MISCONCEPTION; UNITED KINGDOM;

EID: 84882449721     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2012.282     Document Type: Article
Times cited : (243)

References (48)
  • 1
    • 33748506290 scopus 로고    scopus 로고
    • The consent problem within DNA biobanks
    • Shickle D: The consent problem within DNA biobanks. Stud Hist Philos Biol Biomed Sci 2006; 37: 503-519.
    • (2006) Stud Hist Philos Biol Biomed Sci , vol.37 , pp. 503-519
    • Shickle, D.1
  • 2
    • 73449138816 scopus 로고    scopus 로고
    • Broad consent in biobanking: Reflections on seemingly insurmountable dilemmas
    • Caulfield T, Kaye J: Broad consent in biobanking: reflections on seemingly insurmountable dilemmas. Med Law Int 2009; 10: 85-100.
    • (2009) Med Law Int , vol.10 , pp. 85-100
    • Caulfield, T.1    Kaye, J.2
  • 3
    • 34548168599 scopus 로고    scopus 로고
    • Donor perspectives on issues associated with donation of genetic samples and information: An Australian viewpoint
    • Otlowski M: Donor perspectives on issues associated with donation of genetic samples and information: an Australian viewpoint. J Bioethical Inq 2007; 4: 135-150.
    • (2007) J Bioethical Inq , vol.4 , pp. 135-150
    • Otlowski, M.1
  • 4
    • 33745596413 scopus 로고    scopus 로고
    • Consent and anonymization in research involving biobanks: Differing terms and norms present serious barriers to an international framework
    • Elger BS, Caplan AL: Consent and anonymization in research involving biobanks: differing terms and norms present serious barriers to an international framework. EMBO Rep 2006; 7: 661-666.
    • (2006) EMBO Rep , vol.7 , pp. 661-666
    • Elger, B.S.1    Caplan, A.L.2
  • 7
    • 84900052359 scopus 로고    scopus 로고
    • Developing an appropriate consent model for biobanks: In defence of 'broad' consent
    • Kaye J, Stranger M (eds.) . Burlington: Aschgate Publishing Company
    • Otlowski M: Developing an appropriate consent model for biobanks: in defence of 'broad' consent; in: Kaye J, Stranger M (eds.): Principles and Practise in Biobank Governance. Burlington: Aschgate Publishing Company 2009, pp 79-92.
    • (2009) Principles and Practise in Biobank Governance , pp. 79-92
    • Otlowski, M.1
  • 9
    • 84055217709 scopus 로고    scopus 로고
    • In defense of broad consent
    • Helgesson G: In defense of broad consent. Camb Q Healthc Ethics 2012; 21: 40-50.
    • (2012) Camb Q Healthc Ethics , vol.21 , pp. 40-50
    • Helgesson, G.1
  • 11
    • 0347750518 scopus 로고    scopus 로고
    • DNA databanks and consent: A suggested policy option involving an authorization model
    • Caulfield T, Upshur R, Daar A: DNA databanks and consent: a suggested policy option involving an authorization model. BMC Med Ethics 2003; 4: 1.
    • (2003) BMC Med Ethics , vol.4 , pp. 1
    • Caulfield, T.1    Upshur, R.2    Daar, A.3
  • 13
    • 60149102137 scopus 로고    scopus 로고
    • Broadening consent and diluting ethics?
    • Hofmann B: Broadening consent and diluting ethics? J Med Ethics 2009; 35: 125-129.
    • (2009) J Med Ethics , vol.35 , pp. 125-129
    • Hofmann, B.1
  • 14
    • 78650477374 scopus 로고    scopus 로고
    • Consent to biobank research: One size fits all?
    • Solbakk JH, Holm S, Hofmann B (eds) . Heidelberg: Springer
    • Hofmann B, Solbakk JH, Holm S: Consent to biobank research: one size fits all? in Solbakk JH, Holm S, Hofmann B (eds): The Ethics of Research Biobanking. Heidelberg: Springer 2009, pp 3-23.
    • (2009) The Ethics of Research Biobanking , pp. 3-23
    • Hofmann, B.1    Solbakk, J.H.2    Holm, S.3
  • 15
    • 80055082157 scopus 로고    scopus 로고
    • Ethical endgames: Broad consent for narrow interests; Open consent for closed minds
    • Karlsen JR, Solbakk JH, Holm S: Ethical endgames: broad consent for narrow interests; open consent for closed minds. Camb Q Healthc Ethics 2011; 20: 572-583.
    • (2011) Camb Q Healthc Ethics , vol.20 , pp. 572-583
    • Karlsen, J.R.1    Solbakk, J.H.2    Holm, S.3
  • 17
    • 80053307605 scopus 로고    scopus 로고
    • From single biobanks to international networks: Developing e-governance
    • Kaye J: From single biobanks to international networks: developing e-governance. Hum Genet 2011; 130: 377-382.
    • (2011) Hum Genet , vol.130 , pp. 377-382
    • Kaye, J.1
  • 18
    • 84859900558 scopus 로고    scopus 로고
    • From patients to partners: Participant-centric initiatives in biomedical research
    • Kaye J, Curren L, Anderson N et al: From patients to partners: participant-centric initiatives in biomedical research. Nat Rev Genet 2012; 13: 371-376.
    • (2012) Nat Rev Genet , vol.13 , pp. 371-376
    • Kaye, J.1    Curren, L.2    Anderson, N.3
  • 19
    • 71949131197 scopus 로고    scopus 로고
    • 'Broad' consent, exceptions to consent and the question of using biological samples for research purposes different from the initial collection purpose
    • Petrini C: 'Broad' consent, exceptions to consent and the question of using biological samples for research purposes different from the initial collection purpose. Soc Sci Med 2010; 70: 217-220.
    • (2010) Soc Sci Med , vol.70 , pp. 217-220
    • Petrini, C.1
  • 20
    • 84862877183 scopus 로고    scopus 로고
    • Consent and research governance in biobanks: Evidence from focus groups with medical researchers
    • Whitley EA, Kanellopoulou N, Kaye J: Consent and research governance in biobanks: evidence from focus groups with medical researchers. Public Health Genom 2012; 15: 232-242.
    • (2012) Public Health Genom , vol.15 , pp. 232-242
    • Whitley, E.A.1    Kanellopoulou, N.2    Kaye, J.3
  • 21
    • 84984768757 scopus 로고    scopus 로고
    • First genetic trust banks on genes
    • Hodgson J: First genetic trust banks on genes. Nat Biotechnol 2000; 18: 1236.
    • (2000) Nat Biotechnol , vol.18 , pp. 1236
    • Hodgson, J.1
  • 23
  • 25
    • 84862996020 scopus 로고    scopus 로고
    • Embedding biobanks as tools for personalised medicine
    • Kaye J: Embedding biobanks as tools for personalised medicine. Norsk Epidemiol 2012; 21: 169-177.
    • (2012) Norsk Epidemiol , vol.21 , pp. 169-177
    • Kaye, J.1
  • 26
    • 80655141798 scopus 로고    scopus 로고
    • Broad consent is informed consent
    • Sheehan M: Broad consent is informed consent. BMJ 2011; 343: d6900-d6900.
    • (2011) BMJ , vol.343
    • Sheehan, M.1
  • 27
    • 80655139255 scopus 로고    scopus 로고
    • Can broad consent be informed consent?
    • Sheehan M: Can broad consent be informed consent? Public Health Ethics 2011; 4: 226-235.
    • (2011) Public Health Ethics , vol.4 , pp. 226-235
    • Sheehan, M.1
  • 28
    • 84882449965 scopus 로고    scopus 로고
    • UK Biobank
    • UK Biobank. Newsletters 2012 available at. http://www.ukbiobank.ac.uk/ newsletter/.
    • Newsletters 2012
  • 29
    • 84882449204 scopus 로고    scopus 로고
    • Norwegian Institute of Public Health Nyhetsbrev fra Den norske mor og barnundersøkelsen (MoBa). Newsletter from the Norwegian Mother and Child Cohort Study
    • Norwegian Institute of Public Health Nyhetsbrev fra Den norske mor og barnundersøkelsen (MoBa). Newsletter from the Norwegian Mother and Child Cohort Study; Folkehelseinstituttet 2012 available at http://www.fhi.no/eway/ default.aspx?pid=233trg=MainArea-5661MainArea-5661=5631:0:15,2300:1:0:0:::0:0.
    • Folkehelseinstituttet 2012
  • 30
    • 78649929031 scopus 로고    scopus 로고
    • Understanding the new digital divide - A typology of Internet users in Europe
    • Brandtzæg PB, Heim J, Karahasanović A: Understanding the new digital divide - a typology of Internet users in Europe. Int J Hum-Comput Stud 2011; 69: 123-138.
    • (2011) Int J Hum-Comput Stud , vol.69 , pp. 123-138
    • Brandtzæg, P.B.1    Heim, J.2    Karahasanović, A.3
  • 31
    • 84882451505 scopus 로고    scopus 로고
    • European Commission: Biobanks for Europe. Luxembourg: European Union, Directorate General for Research and Innovation, Science in society
    • European Commission: Biobanks for Europe. A Challenge for Governance. Luxembourg: European Union, Directorate General for Research and Innovation, Science in society, 2012; Vol 63.
    • A Challenge for Governance , vol.63 , pp. 2012
  • 32
    • 80054983939 scopus 로고    scopus 로고
    • Research ethics: Treat donors as partners in biobank research
    • Saha K, Hurlbut JB: Research ethics: treat donors as partners in biobank research. Nature 2011; 478: 312-313.
    • (2011) Nature , vol.478 , pp. 312-313
    • Saha, K.1    Hurlbut, J.B.2
  • 33
    • 34250616437 scopus 로고    scopus 로고
    • Transparency and the ethics of communication
    • Hood C, Heald D (eds) . Oxford: Oxford University Press
    • O'Neill O: Transparency and the ethics of communication; in Hood C, Heald D (eds): Transparency: The Key to Better Governance. Oxford: Oxford University Press 2006, pp 74-91.
    • (2006) Transparency: The Key to Better Governance , pp. 74-91
    • O'neill, O.1
  • 34
    • 80855139727 scopus 로고    scopus 로고
    • Relating to participants: How close do biobanks and donors really want to be?
    • Levitt M: Relating to participants: how close do biobanks and donors really want to be? Health Care Anal 2011; 19: 220-230.
    • (2011) Health Care Anal , vol.19 , pp. 220-230
    • Levitt, M.1
  • 35
    • 84859900686 scopus 로고    scopus 로고
    • International biobanking regulations: The promise and the pitfalls
    • Wagstaff A: International biobanking regulations: the promise and the pitfalls. Cancer World 2011; 42: 23-29.
    • (2011) Cancer World , vol.42 , pp. 23-29
    • Wagstaff, A.1
  • 36
    • 80755125656 scopus 로고    scopus 로고
    • You never call, you never write: Why return of 'omic' results to research participants is both a good idea and a moral imperative
    • Angrist M: You never call, you never write: why return of 'omic' results to research participants is both a good idea and a moral imperative. Pers Med 2011; 8: 651-657.
    • (2011) Pers Med , vol.8 , pp. 651-657
    • Angrist, M.1
  • 37
    • 70449644839 scopus 로고    scopus 로고
    • Informational privacy, consent and the 'control' of personal data
    • Whitley EA: Informational privacy, consent and the 'control' of personal data. Inf Secur Tech Rep 2009; 14: 154-159.
    • (2009) Inf Secur Tech Rep , vol.14 , pp. 154-159
    • Whitley, E.A.1
  • 38
    • 84861354533 scopus 로고    scopus 로고
    • Power to the people: A wiki-governance model for biobanks
    • Dove ES, Joly Y, Knoppers BM: Power to the people: a wiki-governance model for biobanks. Genome Biol 2012; 13: 158.
    • (2012) Genome Biol , vol.13 , pp. 158
    • Dove, E.S.1    Joly, Y.2    Knoppers, B.M.3
  • 39
    • 33645743916 scopus 로고    scopus 로고
    • The need for socially robust knowledge
    • Nowotny H: The need for socially robust knowledge. TA-Datenbank- Nachrichten 1999; 3/4: 12-16.
    • (1999) TA-Datenbank-Nachrichten , vol.3-4 , pp. 12-16
    • Nowotny, H.1
  • 40
    • 34248236721 scopus 로고
    • Science for the post-normal age
    • Funtowicz SO, Ravetz JR: Science for the post-normal age. Futures 1993; 25: 739-755.
    • (1993) Futures , vol.25 , pp. 739-755
    • Funtowicz, S.O.1    Ravetz, J.R.2
  • 42
    • 80052573480 scopus 로고    scopus 로고
    • Active choice but not too active: Public perspectives on biobank consent models
    • Simon CM, L'heureux J, Murray JC et al: Active choice but not too active: public perspectives on biobank consent models. Genet Med 2011; 13: 821-831.
    • (2011) Genet Med , vol.13 , pp. 821-831
    • Simon, C.M.1    L'heureux, J.2    Murray, J.C.3
  • 43
    • 81955167410 scopus 로고    scopus 로고
    • Genomics really gets personal: How exome and whole genome sequencing challenge the ethical framework of human genetics research
    • Tabor HK, Berkman BE, Hull SC, Bamshad MJ: Genomics really gets personal: how exome and whole genome sequencing challenge the ethical framework of human genetics research. Am J Med Genet 2011; 155A: 2916-2924.
    • (2011) Am J Med Genet , vol.155 A , pp. 2916-2924
    • Tabor, H.K.1    Berkman, B.E.2    Hull, S.C.3    Bamshad, M.J.4
  • 44
    • 84859566974 scopus 로고    scopus 로고
    • Managing incidental findings and research results in genomic research involving biobanks and archived data sets
    • Wolf SM, Crock BN, Ness BV et al: Managing incidental findings and research results in genomic research involving biobanks and archived data sets. Genet Med 2012; 14: 361-384.
    • (2012) Genet Med , vol.14 , pp. 361-384
    • Wolf, S.M.1    Crock, B.N.2    Ness, B.V.3
  • 45
    • 84874109945 scopus 로고    scopus 로고
    • To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts
    • doi:10.1038/ejhg.2012.130
    • Christenhusz GM, Devriendt K, Dierickx K: To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts. Eur J Hum Genet 2012 available at doi:10.1038/ejhg.2012.130.
    • (2012) Eur J Hum Genet
    • Christenhusz, G.M.1    Devriendt, K.2    Dierickx, K.3
  • 46
    • 84863003423 scopus 로고    scopus 로고
    • Managing incidental findings in population based biobank research
    • Solberg B, Steinsbekk KS: Managing incidental findings in population based biobank research. Nor J Epidemiol 2012; 21: 195-202.
    • (2012) Nor J Epidemiol , vol.21 , pp. 195-202
    • Solberg, B.1    Steinsbekk, K.S.2
  • 47
  • 48
    • 84861912749 scopus 로고    scopus 로고
    • Preventing overdiagnosis: How to stop harming the healthy
    • Moynihan R, Doust J, Henry D: Preventing overdiagnosis: how to stop harming the healthy. BMJ 2012; 344: e3502-e3502.
    • (2012) BMJ , vol.344
    • Moynihan, R.1    Doust, J.2    Henry, D.3


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.