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Volumn 14, Issue 1, 2013, Pages

An effective multisource informed consent procedure for research and clinical practice: An observational study of patient understanding and awareness of their roles as research stakeholders in a cancer biobank

Author keywords

Awareness; Biobank; Empowerment; Informed consent; Patient education; Patients; Understanding

Indexed keywords

ADULT; AGED; AWARENESS; CLINICAL PRACTICE; COMPREHENSION; ETHICS; FEMALE; HEALTH CARE FACILITY; HUMAN; INFORMED CONSENT; MALE; MEDICAL RESEARCH; METHODOLOGY; MIDDLE AGED; MULTIMEDIA; NEOPLASM; PATIENT; PSYCHOLOGY; QUESTIONNAIRE; RESEARCH SUBJECT; STANDARDS;

EID: 84880877268     PISSN: None     EISSN: 14726939     Source Type: Journal    
DOI: 10.1186/1472-6939-14-30     Document Type: Article
Times cited : (37)

References (41)
  • 1
    • 4644281540 scopus 로고    scopus 로고
    • Interventions to improve research participants' understanding in informed consent for research: A systematic review
    • DOI 10.1001/jama.292.13.1593
    • Interventions to improve research participants' understanding in informed consent for research: a systematic review. Flory J, Emanuel E, JAMA 2004 292 1593 1601 10.1001/jama.292.13.1593 15467062 (Pubitemid 39314966)
    • (2004) Journal of the American Medical Association , vol.292 , Issue.13 , pp. 1593-1601
    • Flory, J.1    Emanuel, E.2
  • 2
    • 67649827909 scopus 로고    scopus 로고
    • Research understanding, attitude and awareness towards biobanking: A survey among Italian twin participants to a genetic epidemiological study
    • 10.1186/1472-6939-10-4 19531243
    • Research understanding, attitude and awareness towards biobanking: a survey among Italian twin participants to a genetic epidemiological study. Toccaceli V, Fagnani C, Nistico L, D'Ippolito C, Giannantonio L, Brescianini S, Stazi MA, BMC Med Ethics 2009 10 4 10.1186/1472-6939-10-4 19531243
    • (2009) BMC Med Ethics , vol.10 , pp. 4
    • Toccaceli, V.1    Fagnani, C.2    Nistico, L.3    D'Ippolito, C.4    Giannantonio, L.5    Brescianini, S.6    Stazi, M.A.7
  • 3
    • 84881475348 scopus 로고    scopus 로고
    • http://www.hhs.gov/ohrp/archive/nurcode.html
    • Nuremberg Code 2012 http://www.hhs.gov/ohrp/archive/nurcode.html
    • (2012) Nuremberg Code
  • 5
    • 65649123376 scopus 로고    scopus 로고
    • Globalized clinical trials and informed consent
    • 10.1056/NEJMp0901474 19439740
    • Globalized clinical trials and informed consent. Annas GJ, N Engl J Med 2009 360 2050 2053 10.1056/NEJMp0901474 19439740
    • (2009) N Engl J Med , vol.360 , pp. 2050-2053
    • Annas, G.J.1
  • 6
    • 33748319335 scopus 로고    scopus 로고
    • The therapeutic misconception and our models of competency and informed consent
    • DOI 10.1002/bsl.700
    • The therapeutic misconception and our models of competency and informed consent. Lidz CW, Behav Sci Law 2006 24 535 546 10.1002/bsl.700 16883621 (Pubitemid 44328716)
    • (2006) Behavioral Sciences and the Law , vol.24 , Issue.4 , pp. 535-546
    • Lidz, C.W.1
  • 7
    • 69249116175 scopus 로고    scopus 로고
    • Informed consent: How much and what do patients understand?
    • 10.1016/j.amjsurg.2009.02.010 19716887
    • Informed consent: how much and what do patients understand? Falagas ME, Korbila IP, Giannopoulou KP, Kondilis BK, Peppas G, Am J Surg 2009 198 420 435 10.1016/j.amjsurg.2009.02.010 19716887
    • (2009) Am J Surg , vol.198 , pp. 420-435
    • Falagas, M.E.1    Korbila, I.P.2    Giannopoulou, K.P.3    Kondilis, B.K.4    Peppas, G.5
  • 8
    • 0025730137 scopus 로고
    • The epidemiologist's responsibilities to study participants
    • 2045846
    • The epidemiologist's responsibilities to study participants. Feinleib M, J Clin Epidemiol 1991 44 Suppl 1 73S 79S 2045846
    • (1991) J Clin Epidemiol , vol.44 , Issue.SUPPL. 1
    • Feinleib, M.1
  • 9
    • 57449115536 scopus 로고    scopus 로고
    • Subjects matter: A survey of public opinions about a large genetic cohort study
    • 10.1097/GIM.0b013e31818bb3ab 19011407
    • Subjects matter: a survey of public opinions about a large genetic cohort study. Kaufman D, Murphy J, Scott J, Hudson K, Genet Med 2008 10 831 839 10.1097/GIM.0b013e31818bb3ab 19011407
    • (2008) Genet Med , vol.10 , pp. 831-839
    • Kaufman, D.1    Murphy, J.2    Scott, J.3    Hudson, K.4
  • 10
    • 79953317220 scopus 로고    scopus 로고
    • Study newsletters, community and ethics advisory boards, and focus group discussions provide ongoing feedback for a large biobank
    • 21572889
    • Study newsletters, community and ethics advisory boards, and focus group discussions provide ongoing feedback for a large biobank. McCarty CA, Garber A, Reeser JC, Fost NC, Am J Med Genet A 2011 155A 737 741 21572889
    • (2011) Am J Med Genet A , vol.155 , pp. 737-741
    • McCarty, C.A.1    Garber, A.2    Reeser, J.C.3    Fost, N.C.4
  • 11
    • 84881476564 scopus 로고    scopus 로고
    • Del Consiglio Dei Ministri P. Biotecnologie Le E Biosicurezza La Per C.Nazionale
    • Presidenza del Consiglio dei Ministri and Comitato Nazionale per la Biosicurezza e le Biotecnologie, Linee guida per le la certificazione delle biobanche 2012 http://www.governo.it/biotecnologie/documenti/7-biobanche-1.pdf
    • (2012) Linee Guida per le la Certificazione Delle Biobanche
  • 12
    • 80053413968 scopus 로고    scopus 로고
    • The value of banked samples for oncology drug discovery and development
    • 10.1093/jncimonographs/lgr004 21672897
    • The value of banked samples for oncology drug discovery and development. Shaw PM, Patterson SD, J Natl Cancer Inst Monogr 2011 2011 46 49 10.1093/jncimonographs/lgr004 21672897
    • (2011) J Natl Cancer Inst Monogr , vol.2011 , pp. 46-49
    • Shaw, P.M.1    Patterson, S.D.2
  • 13
    • 80053419624 scopus 로고    scopus 로고
    • Biospecimens and people: A fundamental connection
    • 10.1093/jncimonographs/lgr002 21672895
    • Biospecimens and people: a fundamental connection. Collyar DE, J Natl Cancer Inst Monogr 2011 2011 41 42 10.1093/jncimonographs/lgr002 21672895
    • (2011) J Natl Cancer Inst Monogr , vol.2011 , pp. 41-42
    • Collyar, D.E.1
  • 14
    • 0026931054 scopus 로고
    • Improving communication with cancer patients
    • Improving communication with cancer patients. Siminoff LA, Oncology (Williston Park) 1992 6 83 87
    • (1992) Oncology (Williston Park) , vol.6 , pp. 83-87
    • Siminoff, L.A.1
  • 15
    • 0034932883 scopus 로고    scopus 로고
    • Bio-libraries and DNA storage: Assessment of patient perception of information
    • Bio-libraries and DNA storage: assessment of patient perception of information. Moutel G, De MS, Meningaud JP, Herve C, Med Law 2001 20 193 204 11495203 (Pubitemid 32640220)
    • (2001) Medicine and Law , vol.20 , Issue.2 , pp. 193-204
    • Moutel, G.1    De Montgolfier, S.2    Meningaud, J.-P.3    Herve, C.4
  • 16
    • 0029650014 scopus 로고
    • Informed versus randomised consent to clinical trials
    • 10.1016/S0140-6736(95)91741-1 7564786
    • Informed versus randomised consent to clinical trials. Gallo C, Perrone F, De PS, Giusti C, Lancet 1995 346 1060 1064 10.1016/S0140-6736(95)91741-1 7564786
    • (1995) Lancet , vol.346 , pp. 1060-1064
    • Gallo, C.1    Perrone, F.2    De, P.S.3    Giusti, C.4
  • 17
    • 0021128898 scopus 로고
    • Informed consent for investigational chemotherapy: Patients' and physicians' perceptions
    • Informed consent for investigational chemotherapy: patients' and physicians' perceptions. Penman DT, Holland JC, Bahna GF, Morrow G, Schmale AH, Derogatis LR, Carnrike CL Jr, Cherry R, J Clin Oncol 1984 2 849 855 6737023 (Pubitemid 14050695)
    • (1984) Journal of Clinical Oncology , vol.2 , Issue.7 , pp. 849-855
    • Penman, D.T.1    Holland, J.C.2    Bahna, G.F.3
  • 18
    • 80052549647 scopus 로고    scopus 로고
    • Consumer participation and organizational development in health care: A systematic review
    • 10.1007/s00508-011-0008-x 21739200
    • Consumer participation and organizational development in health care: a systematic review. Tempfer CB, Nowak P, Wien Klin Wochenschr 2011 123 408 414 10.1007/s00508-011-0008-x 21739200
    • (2011) Wien Klin Wochenschr , vol.123 , pp. 408-414
    • Tempfer, C.B.1    Nowak, P.2
  • 19
    • 84865988087 scopus 로고    scopus 로고
    • Patient involvement in a scientific advisory process: Setting the research agenda for medical products
    • 10.1016/j.healthpol.2012.05.014 22739128
    • Patient involvement in a scientific advisory process: setting the research agenda for medical products. Elberse JE, Pittens CA, De Cock BT, Broerse JE, Health Policy 2012 107 231 242 10.1016/j.healthpol.2012.05.014 22739128
    • (2012) Health Policy , vol.107 , pp. 231-242
    • Elberse, J.E.1    Pittens, C.A.2    De Cock, B.T.3    Broerse, J.E.4
  • 20
    • 22544449878 scopus 로고    scopus 로고
    • Public participation in regional health policy: A theoretical framework
    • DOI 10.1016/j.healthpol.2004.11.013, PII S016885100400260X
    • Public participation in regional health policy: a theoretical framework. Thurston WE, MacKean G, Vollman A, Casebeer A, Weber M, Maloff B, Bader J, Health Policy 2005 73 237 252 10.1016/j.healthpol.2004.11.013 16039343 (Pubitemid 41019060)
    • (2005) Health Policy , vol.73 , Issue.3 , pp. 237-252
    • Thurston, W.E.1    MacKean, G.2    Vollman, A.3    Casebeer, A.4    Weber, M.5    Maloff, B.6    Bader, J.7
  • 21
    • 79951750101 scopus 로고    scopus 로고
    • Sharing decisions in breast cancer care: Development of the Decision Analysis System for Oncology (DAS-O) to identify shared decision making during treatment consultations
    • 10.1111/j.1369-7625.2010.00613.x 20629766
    • Sharing decisions in breast cancer care: Development of the Decision Analysis System for Oncology (DAS-O) to identify shared decision making during treatment consultations. Brown RF, Butow PN, Juraskova I, Ribi K, Gerber D, Bernhard J, Tattersall MH, Health Expect 2011 14 29 37 10.1111/j.1369-7625.2010. 00613.x 20629766
    • (2011) Health Expect , vol.14 , pp. 29-37
    • Brown, R.F.1    Butow, P.N.2    Juraskova, I.3    Ribi, K.4    Gerber, D.5    Bernhard, J.6    Tattersall, M.H.7
  • 22
    • 8444222282 scopus 로고    scopus 로고
    • Public involvement in breast cancer research: An analysis and model for future research
    • DOI 10.2190/HPXB-9RK8-ETVM-RVEA
    • Public involvement in breast cancer research: an analysis and model for future research. McCormick S, Brody J, Brown P, Polk R, Int J Health Serv 2004 34 625 646 10.2190/HPXB-9RK8-ETVM-RVEA 15560426 (Pubitemid 39487734)
    • (2004) International Journal of Health Services , vol.34 , Issue.4 , pp. 625-646
    • McCormick, S.1    Brody, J.2    Brown, P.3    Polk, R.4
  • 24
    • 36248945663 scopus 로고    scopus 로고
    • Assessing genetic testing: Who are the "lay experts"?
    • DOI 10.1016/j.healthpol.2007.06.004, PII S0168851007001339
    • Assessing genetic testing: who are the lay experts? Goven J, Health Policy 2008 85 1 18 10.1016/j.healthpol.2007.06.004 17645980 (Pubitemid 350137515)
    • (2008) Health Policy , vol.85 , Issue.1 , pp. 1-18
    • Goven, J.1
  • 25
    • 84929339603 scopus 로고    scopus 로고
    • Patient empowerment-who empowers whom? Editorial
    • 10.1016/S0140-6736(12)60699-0 22559881
    • Patient empowerment-who empowers whom? Editorial. The Lancet, Lancet 2012 379 1677 10.1016/S0140-6736(12)60699-0 22559881
    • (2012) Lancet , vol.379 , pp. 1677
    • Lancet, T.1
  • 26
    • 21744444956 scopus 로고    scopus 로고
    • Building on relationships of trust in biobank research
    • DOI 10.1136/jme.2004.009456
    • Building on relationships of trust in biobank research. Hansson MG, J Med Ethics 2005 31 415 418 10.1136/jme.2004.009456 15994363 (Pubitemid 40945971)
    • (2005) Journal of Medical Ethics , vol.31 , Issue.7 , pp. 415-418
    • Hansson, M.G.1
  • 27
    • 48349127513 scopus 로고    scopus 로고
    • Evidence of support for biobanking practices
    • 10.1136/bmj.a337 18617495
    • Evidence of support for biobanking practices. Laurie G, BMJ 2008 337 337 10.1136/bmj.a337 18617495
    • (2008) BMJ , vol.337 , pp. 1337
    • Laurie, G.1
  • 28
    • 27844609309 scopus 로고    scopus 로고
    • Informed consent: Can a patient ever be fully informed?
    • Informed consent: can a patient ever be fully informed? Lupton M, Curr Opin Obstet Gynecol 2005 17 601 604 10.1097/01.gco.0000191900.61697.74 16258342 (Pubitemid 41658967)
    • (2005) Current Opinion in Obstetrics and Gynecology , vol.17 , Issue.6 , pp. 601-604
    • Lupton, M.1
  • 29
    • 0032783565 scopus 로고    scopus 로고
    • Awareness and motivation of Japanese donors of blood for research
    • Awareness and motivation of Japanese donors of blood for research. Nakayama T, Muto K, Yoshiike N, Yokoyama T, Am J Public Health 1999 89 1433 1434 10.2105/AJPH.89.9.1433 10474568 (Pubitemid 29404574)
    • (1999) American Journal of Public Health , vol.89 , Issue.9 , pp. 1433-1434
    • Nakayama, T.1    Muto, K.2    Yoshiike, N.3    Yokoyama, T.4
  • 30
    • 72249092345 scopus 로고    scopus 로고
    • Public perspectives on informed consent for biobanking
    • 10.2105/AJPH.2008.157099 19833988
    • Public perspectives on informed consent for biobanking. Murphy J, Scott J, Kaufman D, Geller G, LeRoy L, Hudson K, Am J Public Health 2009 99 2128 2134 10.2105/AJPH.2008.157099 19833988
    • (2009) Am J Public Health , vol.99 , pp. 2128-2134
    • Murphy, J.1    Scott, J.2    Kaufman, D.3    Geller, G.4    Leroy, L.5    Hudson, K.6
  • 31
    • 56149125663 scopus 로고    scopus 로고
    • Biobank research and the right to privacy
    • 10.1007/s11017-008-9079-8 18855123
    • Biobank research and the right to privacy. Ursin LO, Theor Med Bioeth 2008 29 267 285 10.1007/s11017-008-9079-8 18855123
    • (2008) Theor Med Bioeth , vol.29 , pp. 267-285
    • Ursin, L.O.1
  • 32
    • 71849090072 scopus 로고    scopus 로고
    • Public opinion about the importance of privacy in biobank research
    • 10.1016/j.ajhg.2009.10.002 19878915
    • Public opinion about the importance of privacy in biobank research. Kaufman DJ, Murphy-Bollinger J, Scott J, Hudson KL, Am J Hum Genet 2009 85 643 654 10.1016/j.ajhg.2009.10.002 19878915
    • (2009) Am J Hum Genet , vol.85 , pp. 643-654
    • Kaufman, D.J.1    Murphy-Bollinger, J.2    Scott, J.3    Hudson, K.L.4
  • 33
    • 85027937468 scopus 로고    scopus 로고
    • Personal privacy, public benefits, and biobanks: A conjoint analysis of policy priorities and public perceptions
    • 10.1038/gim.0b013e31822e578f 22261752
    • Personal privacy, public benefits, and biobanks: a conjoint analysis of policy priorities and public perceptions. Pullman D, Etchegary H, Gallagher K, Hodgkinson K, Keough M, Morgan D, Street C, Genet Med 2012 14 229 235 10.1038/gim.0b013e31822e578f 22261752
    • (2012) Genet Med , vol.14 , pp. 229-235
    • Pullman, D.1    Etchegary, H.2    Gallagher, K.3    Hodgkinson, K.4    Keough, M.5    Morgan, D.6    Street, C.7
  • 34
    • 33646164690 scopus 로고    scopus 로고
    • Views of female breast cancer patients who donated biologic samples regarding storage and use of samples for genetic research
    • 10.1111/j.1399-0004.2006.00614.x 16650074
    • Views of female breast cancer patients who donated biologic samples regarding storage and use of samples for genetic research. Kaphingst KA, Janoff JM, Harris LN, Emmons KM, Clin Genet 2006 69 393 398 10.1111/j.1399-0004.2006. 00614.x 16650074
    • (2006) Clin Genet , vol.69 , pp. 393-398
    • Kaphingst, K.A.1    Janoff, J.M.2    Harris, L.N.3    Emmons, K.M.4
  • 36
    • 61849175400 scopus 로고    scopus 로고
    • 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
    • 10.1136/jcp.2008.061069 19017681
    • 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, Sietses C, van den Tol P, J Clin Pathol 2009 62 275 278 10.1136/jcp.2008.061069 19017681
    • (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    Sietses, C.6    Van Den Tol, P.7
  • 39
    • 84881480014 scopus 로고    scopus 로고
    • Two decades' experience with a prospective biobank for urologic oncology: Research, clinical care, and the patients' view
    • in press
    • Two decades' experience with a prospective biobank for urologic oncology: research, clinical care, and the patients' view. Huber J, Herpel E, Jakobi H, Hadaschik BA, Pahernik S, Hohenfellner M, Urol Oncol 2012 in press
    • (2012) Urol Oncol
    • Huber, J.1    Herpel, E.2    Jakobi, H.3    Hadaschik, B.A.4    Pahernik, S.5    Hohenfellner, M.6
  • 40
    • 80053334174 scopus 로고    scopus 로고
    • Biobanking residual tissues
    • 10.1007/s00439-011-1074-x 21814798
    • Biobanking residual tissues. Riegman PH, Van Veen EB, Hum Genet 2011 130 357 368 10.1007/s00439-011-1074-x 21814798
    • (2011) Hum Genet , vol.130 , pp. 357-368
    • Riegman, P.H.1    Van Veen, E.B.2
  • 41
    • 84865767565 scopus 로고    scopus 로고
    • Inclusion of residual tissue in biobanks: Opt-in or opt-out?
    • 10.1371/journal.pbio.1001373 22899893
    • Inclusion of residual tissue in biobanks: opt-in or opt-out? Giesbertz NA, Bredenoord AL, Van Delden JJ, PLoS Biol 2012 10 1001373 10.1371/journal. pbio.1001373 22899893
    • (2012) PLoS Biol , vol.10 , pp. 51001373
    • Giesbertz, N.A.1    Bredenoord, A.L.2    Van Delden, J.J.3


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