-
3
-
-
33645232385
-
One-time general consent for research on biological samples: opt out system for patients is optimal and endorsed in many countries
-
Coebergh JW, van Veen EB, Vandenbroucke JP, van Diest P, Oosterhuis W, (2006) One-time general consent for research on biological samples: opt out system for patients is optimal and endorsed in many countries. BMJ 332: 665.
-
(2006)
BMJ
, vol.332
, pp. 665
-
-
Coebergh, J.W.1
van Veen, E.B.2
Vandenbroucke, J.P.3
van Diest, P.4
Oosterhuis, W.5
-
4
-
-
33645228965
-
One-time general consent for research on biological samples: good idea, but will it happen?
-
Furness PN, (2006) One-time general consent for research on biological samples: good idea, but will it happen? BMJ 332: 665.
-
(2006)
BMJ
, vol.332
, pp. 665
-
-
Furness, P.N.1
-
5
-
-
27244459748
-
Potential harms, anonymization, and the right to withdraw consent to biobank research
-
Eriksson S, Helgesson G, (2005) Potential harms, anonymization, and the right to withdraw consent to biobank research. Eur J Hum Genet 13: 1071-1076.
-
(2005)
Eur J Hum Genet
, vol.13
, pp. 1071-1076
-
-
Eriksson, S.1
Helgesson, G.2
-
6
-
-
78650415869
-
Assessing the privacy risks of data sharing in genomics
-
Heeney C, Hawkins N, de Vries J, Boddington P, Kaye J, (2011) Assessing the privacy risks of data sharing in genomics. Public Health Genomics 14: 17-25.
-
(2011)
Public Health Genomics
, vol.14
, pp. 17-25
-
-
Heeney, C.1
Hawkins, N.2
de Vries, J.3
Boddington, P.4
Kaye, J.5
-
7
-
-
84861655744
-
The case of biobank with the law: between a legal and scientific fiction
-
Sandor J, Bard P, Tamburrini C, Tannsjo T, (2011) The case of biobank with the law: between a legal and scientific fiction. J Med Ethics 38: 347-350.
-
(2011)
J Med Ethics
, vol.38
, pp. 347-350
-
-
Sandor, J.1
Bard, P.2
Tamburrini, C.3
Tannsjo, T.4
-
8
-
-
38449089111
-
The uneasy ethical and legal underpinnings of large-scale genomic biobanks
-
Greely HT, (2007) The uneasy ethical and legal underpinnings of large-scale genomic biobanks. Annu Rev Genomics Hum Genet 8: 343-364.
-
(2007)
Annu Rev Genomics Hum Genet
, vol.8
, pp. 343-364
-
-
Greely, H.T.1
-
10
-
-
48749118298
-
-
Council for International Organizations of medical Sciences (CIOMS) in collaboration with the World Health Organisation (WHO)
-
Council for International Organizations of medical Sciences (CIOMS) in collaboration with the World Health Organisation (WHO) (2008) International ethical guidelines for epidemiological studies.
-
(2008)
International ethical guidelines for epidemiological studies
-
-
-
11
-
-
33751113667
-
TuBaFrost 3: regulatory and ethical issues on the exchange of residual tissue for research across Europe
-
van Veen EB, Riegman PH, Dinjens WN, Lam KH, Oomen MH, et al. (2006) TuBaFrost 3: regulatory and ethical issues on the exchange of residual tissue for research across Europe. Eur J Cancer 42: 2914-2923.
-
(2006)
Eur J Cancer
, vol.42
, pp. 2914-2923
-
-
van Veen, E.B.1
Riegman, P.H.2
Dinjens, W.N.3
Lam, K.H.4
Oomen, M.H.5
-
12
-
-
84859001462
-
Biobank research: who benefits from individual consent?
-
Stjernschantz FJ, Hansson MG, Eriksson S, (2011) Biobank research: who benefits from individual consent? BMJ 343: d5647.
-
(2011)
BMJ
, vol.343
-
-
Stjernschantz, F.J.1
Hansson, M.G.2
Eriksson, S.3
-
15
-
-
84864015350
-
Turning residual human biological materials into research collections: playing with consent
-
Gefenas E, Dranseika V, Serepkaite J, Cekanauskaite A, Caenazzo L, et al. (2012) Turning residual human biological materials into research collections: playing with consent. J Med Ethics 38: 351-355.
-
(2012)
J Med Ethics
, vol.38
, pp. 351-355
-
-
Gefenas, E.1
Dranseika, V.2
Serepkaite, J.3
Cekanauskaite, A.4
Caenazzo, L.5
-
16
-
-
48349100315
-
Patients' refusal to consent to storage and use of samples in Swedish biobanks: cross sectional study
-
Johnsson L, Hansson MG, Eriksson S, Helgesson G, (2008) Patients' refusal to consent to storage and use of samples in Swedish biobanks: cross sectional study. BMJ 337: a345.
-
(2008)
BMJ
, vol.337
-
-
Johnsson, L.1
Hansson, M.G.2
Eriksson, S.3
Helgesson, G.4
-
17
-
-
77953429952
-
Principles of human subjects protections applied in an opt-out, de-identified biobank
-
Pulley J, Clayton E, Bernard GR, Roden DM, Masys DR, (2010) Principles of human subjects protections applied in an opt-out, de-identified biobank. Clin Transl Sci 3: 42-48.
-
(2010)
Clin Transl Sci
, vol.3
, pp. 42-48
-
-
Pulley, J.1
Clayton, E.2
Bernard, G.R.3
Roden, D.M.4
Masys, D.R.5
-
18
-
-
33847374284
-
Value of recruitment strategies used in a primary care practice-based trial
-
Ellis SD, Bertoni AG, Bonds DE, Clinch CR, Balasubramanyam A, et al. (2007) Value of recruitment strategies used in a primary care practice-based trial. Contemp Clin Trials 28: 258-267.
-
(2007)
Contemp Clin Trials
, vol.28
, pp. 258-267
-
-
Ellis, S.D.1
Bertoni, A.G.2
Bonds, D.E.3
Clinch, C.R.4
Balasubramanyam, A.5
-
19
-
-
33644928770
-
Impact of institutional review board practice variation on observational health services research
-
Green LA, Lowery JC, Kowalski CP, Wyszewianski L, (2006) Impact of institutional review board practice variation on observational health services research. Health Serv Res 41: 214-230.
-
(2006)
Health Serv Res
, vol.41
, pp. 214-230
-
-
Green, L.A.1
Lowery, J.C.2
Kowalski, C.P.3
Wyszewianski, L.4
-
20
-
-
27144455789
-
Recruiting patients to medical research: double blind randomised trial of "opt-in" versus "opt-out" strategies
-
Junghans C, Feder G, Hemingway H, Timmis A, Jones M, (2005) Recruiting patients to medical research: double blind randomised trial of "opt-in" versus "opt-out" strategies. BMJ 331: 940.
-
(2005)
BMJ
, vol.331
, pp. 940
-
-
Junghans, C.1
Feder, G.2
Hemingway, H.3
Timmis, A.4
Jones, M.5
-
21
-
-
38049075409
-
Low risk research using routinely collected identifiable health information without informed consent: encounters with the Patient Information Advisory Group
-
Metcalfe C, Martin RM, Noble S, Lane JA, Hamdy FC, et al. (2008) Low risk research using routinely collected identifiable health information without informed consent: encounters with the Patient Information Advisory Group. J Med Ethics 34: 37-40.
-
(2008)
J Med Ethics
, vol.34
, pp. 37-40
-
-
Metcalfe, C.1
Martin, R.M.2
Noble, S.3
Lane, J.A.4
Hamdy, F.C.5
-
22
-
-
48349127513
-
Consent for Biobanking. Lack of dissent when opting in doesn't necessarily support "opt out"
-
Laurie G, (2008) Consent for Biobanking. Lack of dissent when opting in doesn't necessarily support "opt out". BMJ 337: a337.
-
(2008)
BMJ
, vol.337
-
-
Laurie, G.1
-
25
-
-
17444372789
-
Scientific research is a moral duty
-
Harris J, (2005) Scientific research is a moral duty. J Med Ethics 31: 242-248.
-
(2005)
J Med Ethics
, vol.31
, pp. 242-248
-
-
Harris, J.1
-
26
-
-
58649115191
-
Free riders and pious sons-why science research remains obligatory
-
Chan S, Harris J, (2009) Free riders and pious sons-why science research remains obligatory. Bioethics 23: 161-171.
-
(2009)
Bioethics
, vol.23
, pp. 161-171
-
-
Chan, S.1
Harris, J.2
-
27
-
-
0037151917
-
No consent should be needed for using leftover body material for scientific purposes
-
van Diest PJ, (2002) No consent should be needed for using leftover body material for scientific purposes. BMJ 325: 648-651.
-
(2002)
BMJ
, vol.325
, pp. 648-651
-
-
van Diest, P.J.1
-
28
-
-
0035318620
-
Solidarity and equity: new ethical frameworks for genetic databases
-
Chadwick R, Berg K, (2001) Solidarity and equity: new ethical frameworks for genetic databases. Nat Rev Genet 2: 318-321.
-
(2001)
Nat Rev Genet
, vol.2
, pp. 318-321
-
-
Chadwick, R.1
Berg, K.2
-
31
-
-
67650001781
-
The obligation to participate in biomedical research
-
Schaefer GO, Emanuel EJ, Wertheimer A, (2009) The obligation to participate in biomedical research. JAMA 302: 67-72.
-
(2009)
JAMA
, vol.302
, pp. 67-72
-
-
Schaefer, G.O.1
Emanuel, E.J.2
Wertheimer, A.3
-
32
-
-
33846900498
-
John Harris' argument for a duty to research
-
Brassington I, (2007) John Harris' argument for a duty to research. Bioethics 21: 160-168.
-
(2007)
Bioethics
, vol.21
, pp. 160-168
-
-
Brassington, I.1
-
33
-
-
34447321819
-
Participation in biomedical research is an imperfect moral duty: a response to John Harris
-
Shapshay S, Pimple KD, (2007) Participation in biomedical research is an imperfect moral duty: a response to John Harris. J Med Ethics 33: 414-417.
-
(2007)
J Med Ethics
, vol.33
, pp. 414-417
-
-
Shapshay, S.1
Pimple, K.D.2
-
35
-
-
33344475444
-
Alternative consent approaches for biobank research
-
Maschke KJ, (2006) Alternative consent approaches for biobank research. Lancet Oncol 7: 193-194.
-
(2006)
Lancet Oncol
, vol.7
, pp. 193-194
-
-
Maschke, K.J.1
-
36
-
-
0037151917
-
No consent should be needed for using leftover body material for scientific purposes
-
Savulescu J, (2002) No consent should be needed for using leftover body material for scientific purposes. BMJ 325: 648-651.
-
(2002)
BMJ
, vol.325
, pp. 648-651
-
-
Savulescu, J.1
-
38
-
-
79151476271
-
Disclosure of individual genetic data to research participants: the debate reconsidered
-
Bredenoord AL, Kroes HY, Cuppen E, Parker M, van Delden JJ, (2011) Disclosure of individual genetic data to research participants: the debate reconsidered. Trends Genet 27: 41-47.
-
(2011)
Trends Genet
, vol.27
, pp. 41-47
-
-
Bredenoord, A.L.1
Kroes, H.Y.2
Cuppen, E.3
Parker, M.4
van Delden, J.J.5
-
39
-
-
41849095185
-
Research ethics recommendations for whole-genome research: consensus statement
-
10.1371/journal.pbio.0060073
-
Caulfield T, McGuire AL, Cho M, Buchanan JA, Burgess MM, et al. (2008) Research ethics recommendations for whole-genome research: consensus statement. PLoS Biol 6: e73 doi:10.1371/journal.pbio.0060073.
-
(2008)
PLoS Biol
, vol.6
-
-
Caulfield, T.1
McGuire, A.L.2
Cho, M.3
Buchanan, J.A.4
Burgess, M.M.5
-
41
-
-
0003793334
-
-
Oxford: Oxford University Press
-
Berlin I (1969) Four essays on liberty. Oxford: Oxford University Press. 166-217.
-
(1969)
Four essays on liberty
, pp. 166-217
-
-
Berlin, I.1
-
42
-
-
27144550146
-
Attaining adequate consent for the use of electronic patient records: an opt-out strategy to reconcile individuals' rights and public benefit
-
Clark AM, Findlay IN, (2005) Attaining adequate consent for the use of electronic patient records: an opt-out strategy to reconcile individuals' rights and public benefit. Public Health 119: 1003-1010.
-
(2005)
Public Health
, vol.119
, pp. 1003-1010
-
-
Clark, A.M.1
Findlay, I.N.2
-
43
-
-
33747167062
-
Overcoming barriers to recruitment in health research
-
Hewison J, Haines A, (2006) Overcoming barriers to recruitment in health research. BMJ 333: 300-302.
-
(2006)
BMJ
, vol.333
, pp. 300-302
-
-
Hewison, J.1
Haines, A.2
-
45
-
-
1842739487
-
Lessons from the central Hampshire electronic health record pilot project: issues of data protection and consent
-
Adams T, Budden M, Hoare C, Sanderson H, (2004) Lessons from the central Hampshire electronic health record pilot project: issues of data protection and consent. BMJ 328: 871-874.
-
(2004)
BMJ
, vol.328
, pp. 871-874
-
-
Adams, T.1
Budden, M.2
Hoare, C.3
Sanderson, H.4
-
47
-
-
39549094008
-
Attitudes and perceptions of patients towards methods of establishing a DNA biobank
-
Pulley JM, Brace MM, Bernard GR, Masys DR, (2008) Attitudes and perceptions of patients towards methods of establishing a DNA biobank. Cell Tissue Bank 9: 55-65.
-
(2008)
Cell Tissue Bank
, vol.9
, pp. 55-65
-
-
Pulley, J.M.1
Brace, M.M.2
Bernard, G.R.3
Masys, D.R.4
-
49
-
-
79952417119
-
Biobanks need publicity
-
Gaskell G, Gottweis H, (2011) Biobanks need publicity. Nature 471: 159-160.
-
(2011)
Nature
, vol.471
, pp. 159-160
-
-
Gaskell, G.1
Gottweis, H.2
-
50
-
-
81955161816
-
Two large-scale surveys on community attitudes toward an opt-out biobank
-
Brothers KB, Morrison DR, Clayton EW, (2011) Two large-scale surveys on community attitudes toward an opt-out biobank. Am J Med Genet Part A 155: 2982-2990.
-
(2011)
Am J Med Genet Part A
, vol.155
, pp. 2982-2990
-
-
Brothers, K.B.1
Morrison, D.R.2
Clayton, E.W.3
-
51
-
-
40449089389
-
Ownership and uses of human tissue: what are the opinions of surgical in-patients?
-
Bryant RJ, Harrison RF, Start RD, Chetwood AS, Chesshire AM, et al. (2008) Ownership and uses of human tissue: what are the opinions of surgical in-patients? J Clin Pathol 61: 322-326.
-
(2008)
J Clin Pathol
, vol.61
, pp. 322-326
-
-
Bryant, R.J.1
Harrison, R.F.2
Start, R.D.3
Chetwood, A.S.4
Chesshire, A.M.5
-
52
-
-
33644930832
-
One-time general consent for research on biological samples
-
Wendler D, (2006) One-time general consent for research on biological samples. BMJ 332: 544-547.
-
(2006)
BMJ
, vol.332
, pp. 544-547
-
-
Wendler, D.1
-
53
-
-
33344464435
-
Public perceptions of biomedical research: a survey of the general population in Ireland
-
Cousins G, McGee H, Ring L, Conroy R, Kay E, et al. (2005) Public perceptions of biomedical research: a survey of the general population in Ireland.
-
(2005)
-
-
Cousins, G.1
McGee, H.2
Ring, L.3
Conroy, R.4
Kay, E.5
-
54
-
-
80052573480
-
Active choice but not too active: public perspectives on biobank consent models
-
Simon CM, L'heureux J, Murray JC, Winokur P, Weiner G, et al. (2011) Active choice but not too active: public perspectives on biobank consent models. Genet Med 13: 821-831.
-
(2011)
Genet Med
, vol.13
, pp. 821-831
-
-
Simon, C.M.1
L'heureux, J.2
Murray, J.C.3
Winokur, P.4
Weiner, G.5
-
55
-
-
77956634832
-
Glad you asked: participants' opinions of re-consent for dbGaP data submission
-
Ludman EJ, Fullerton SM, Spangler L, Brown Trinidad S, Fujii MM, et al. (2010) Glad you asked: participants' opinions of re-consent for dbGaP data submission. J Empir Res Hum Res Ethics 5: 9-16.
-
(2010)
J Empir Res Hum Res Ethics
, vol.5
, pp. 9-16
-
-
Ludman, E.J.1
Fullerton, S.M.2
Spangler, L.3
Brown Trinidad, S.4
Fujii, M.M.5
-
57
-
-
77958489649
-
Hypothetical and factual willingness to participate in biobank research
-
Johnsson L, Helgesson G, Rafnar T, Halldorsdottir I, Chia KS, et al. (2010) Hypothetical and factual willingness to participate in biobank research. Eur J Hum Genet 18: 1261-1264.
-
(2010)
Eur J Hum Genet
, vol.18
, pp. 1261-1264
-
-
Johnsson, L.1
Helgesson, G.2
Rafnar, T.3
Halldorsdottir, I.4
Chia, K.S.5
-
58
-
-
61849175400
-
Opt-out plus, the patients' choice: preferences of cancer patients concerning information and consent regimen for future research with biological samples archived in the context of treatment
-
Vermeulen E, Schmidt MK, Aaronson NK, Kuenen M, van der Valk P, et al. (2009) Opt-out plus, the patients' choice: preferences of cancer patients concerning information and consent regimen for future research with biological samples archived in the context of treatment. J Clin Pathol 62: 275-278.
-
(2009)
J Clin Pathol
, vol.62
, pp. 275-278
-
-
Vermeulen, E.1
Schmidt, M.K.2
Aaronson, N.K.3
Kuenen, M.4
van der Valk, P.5
-
59
-
-
70350660785
-
A trial of consent procedures for future research with clinically derived biological samples
-
Vermeulen E, Schmidt MK, Aaronson NK, Kuenen M, Baas-Vrancken Peeters MJ, et al. (2009) A trial of consent procedures for future research with clinically derived biological samples. Br J Cancer 101: 1505-1512.
-
(2009)
Br J Cancer
, vol.101
, pp. 1505-1512
-
-
Vermeulen, E.1
Schmidt, M.K.2
Aaronson, N.K.3
Kuenen, M.4
Baas-Vrancken Peeters, M.J.5
-
60
-
-
77956341799
-
Donors perceptions of consent to and feedback from biobank research: time to acknowledge diversity?
-
Hoeyer K, (2010) Donors perceptions of consent to and feedback from biobank research: time to acknowledge diversity? Public Health Genomics 13: 345-352.
-
(2010)
Public Health Genomics
, vol.13
, pp. 345-352
-
-
Hoeyer, K.1
-
61
-
-
33645244336
-
One-time general consent for research on biological samples: autonomy and majority rules have been misunderstood
-
Hunter D, (2006) One-time general consent for research on biological samples: autonomy and majority rules have been misunderstood. BMJ 332: 665-666.
-
(2006)
BMJ
, vol.332
, pp. 665-666
-
-
Hunter, D.1
-
62
-
-
38549099198
-
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 J 18: 209-226.
-
(2007)
Kings Law J
, vol.18
, pp. 209-226
-
-
Caulfield, T.1
-
63
-
-
40849139474
-
Ethical, legal, and social implications of biobanks for genetics research
-
Haga SB, Beskow LM, (2008) Ethical, legal, and social implications of biobanks for genetics research. Adv Genet 60: 505-544.
-
(2008)
Adv Genet
, vol.60
, pp. 505-544
-
-
Haga, S.B.1
Beskow, L.M.2
-
64
-
-
38349081526
-
Rules for donations to tissue banks-what next?
-
Glantz L, Roche P, Annas GJ, (2008) Rules for donations to tissue banks-what next? N Engl J Med 358: 298-303.
-
(2008)
N Engl J Med
, vol.358
, pp. 298-303
-
-
Glantz, L.1
Roche, P.2
Annas, G.J.3
-
65
-
-
0028809482
-
Informed consent for genetic research on stored tissue samples
-
Clayton EW, Steinberg KK, Khoury MJ, Thomson E, Andrews L, et al. (1995) Informed consent for genetic research on stored tissue samples. JAMA 274: 1786-1792.
-
(1995)
JAMA
, vol.274
, pp. 1786-1792
-
-
Clayton, E.W.1
Steinberg, K.K.2
Khoury, M.J.3
Thomson, E.4
Andrews, L.5
-
66
-
-
71949131197
-
"Broad" consent, exceptions to consent and the question of using biological samples for research purposes different from the initial collection purpose
-
Petrini C, (2010) "Broad" consent, exceptions to consent and the question of using biological samples for research purposes different from the initial collection purpose. Soc Sci Med 70: 217-220.
-
(2010)
Soc Sci Med
, vol.70
, pp. 217-220
-
-
Petrini, C.1
-
67
-
-
33748506290
-
The consent problem within DNA biobanks
-
Shickle D, (2006) The consent problem within DNA biobanks. Stud Hist Philos Biol Biomed Sci 37: 503-519.
-
(2006)
Stud Hist Philos Biol Biomed Sci
, vol.37
, pp. 503-519
-
-
Shickle, D.1
-
68
-
-
79960834031
-
Feedback of individual genetic results to research participants: in favor of a qualified disclosure policy
-
Bredenoord AL, Onland-Moret NC, van Delden JJM, (2011) Feedback of individual genetic results to research participants: in favor of a qualified disclosure policy. Hum Mutat 32: 861-867.
-
(2011)
Hum Mutat
, vol.32
, pp. 861-867
-
-
Bredenoord, A.L.1
Onland-Moret, N.C.2
van Delden, J.J.M.3
-
69
-
-
79951802578
-
Scientific citizenship, benefit, and protection in population-based research
-
In: Solbakk JH, Holm S, Hofmann B, editors, LLC: Springer Science+Business Media
-
Árnason V (2009) Scientific citizenship, benefit, and protection in population-based research. In: Solbakk JH, Holm S, Hofmann B, editors. The ethics of research biobanking. LLC: Springer Science+Business Media. 131-141.
-
(2009)
The ethics of research biobanking
, pp. 131-141
-
-
Árnason, V.1
-
71
-
-
36048972377
-
Consent issues in human research
-
In: Emanuel EJ, Crouch RA, Arras JD, Moreno JD, Grady C, editors, John Hopkins University Press
-
Levine RJ (2003) Consent issues in human research. In: Emanuel EJ, Crouch RA, Arras JD, Moreno JD, Grady C, editors. Ethical and regulatory aspects of clinical research: readings and commentary. John Hopkins University Press. 197-201.
-
(2003)
Ethical and regulatory aspects of clinical research: Readings and commentary197-201
, pp. 197-201
-
-
Levine, R.J.1
-
72
-
-
2442506800
-
Governing UK Biobank: the importance of ensuring public trust
-
Tutton R, Kaye J, Hoeyer K, (2004) Governing UK Biobank: the importance of ensuring public trust. Trends Biotechnol 22: 284-285.
-
(2004)
Trends Biotechnol
, vol.22
, pp. 284-285
-
-
Tutton, R.1
Kaye, J.2
Hoeyer, K.3
-
73
-
-
61349127907
-
Obtaining consent for future research with induced pluripotent cells: opportunities and challenges
-
10.1371/journal.pbio.1000042
-
Aalto-Setälä K, Conklin BR, Lo B, (2009) Obtaining consent for future research with induced pluripotent cells: opportunities and challenges. PLoS Biol 7: e42 doi:10.1371/journal.pbio.1000042.
-
(2009)
PLoS Biol
, vol.7
-
-
Aalto-Setälä, K.1
Conklin, B.R.2
Lo, B.3
-
74
-
-
82255174984
-
Using human tissue: when do we need consent?
-
Parker L, (2011) Using human tissue: when do we need consent? J Med Ethics 37: 759-761.
-
(2011)
J Med Ethics
, vol.37
, pp. 759-761
-
-
Parker, L.1
-
75
-
-
84865721901
-
Consent in psychiatric biobanks for pharmacogenetic research
-
van der Baan FH, Bernabe RD, Bredenoord AL, Gregoor JG, Meynen G, et al. (2011) Consent in psychiatric biobanks for pharmacogenetic research. Int J Neuropsychopharmacol 21: 1-6.
-
(2011)
Int J Neuropsychopharmacol
, vol.21
, pp. 1-6
-
-
van der Baan, F.H.1
Bernabe, R.D.2
Bredenoord, A.L.3
Gregoor, J.G.4
Meynen, G.5
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