메뉴 건너뛰기




Volumn 23, Issue 12, 2015, Pages 1607-1614

Stakeholders' perspectives on biobank-based genomic research: Systematic review of the literature

Author keywords

[No Author keywords available]

Indexed keywords

BIOBANK; CONFIDENTIALITY; CONTENT ANALYSIS; ETHICS; GENOMICS; HEALTH CARE FACILITY; HEALTH CARE ORGANIZATION; HUMAN; INCIDENTAL FINDING; INFORMED CONSENT; MEDICAL INFORMATION; MEDICAL RESEARCH; PATIENT PARTICIPATION; PRACTICE GUIDELINE; PRIORITY JOURNAL; REVIEW; RISK BENEFIT ANALYSIS; TISSUE SECTION; FACTUAL DATABASE; LEGISLATION AND JURISPRUDENCE; META ANALYSIS;

EID: 84948720885     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2015.27     Document Type: Review
Times cited : (47)

References (65)
  • 1
    • 84891102589 scopus 로고    scopus 로고
    • Mutational signatures: The patterns of somatic mutations hidden in cancer genomes
    • Alexandrov LB, Stratton MR. Mutational signatures: the patterns of somatic mutations hidden in cancer genomes. Curr Opin Genet Dev 2014; 24: 52-60
    • (2014) Curr Opin Genet Dev , vol.24 , pp. 52-60
    • Alexandrov, L.B.1    Stratton, M.R.2
  • 2
    • 84875758730 scopus 로고    scopus 로고
    • Lessons from the cancer genome
    • Garraway LA, Lander ES. Lessons from the cancer genome. Cell 2013; 153: 17-37
    • (2013) Cell , vol.153 , pp. 17-37
    • Garraway, L.A.1    Lander, E.S.2
  • 3
    • 7644232196 scopus 로고    scopus 로고
    • Science and society-rhe social and ethical issues of postgenomic human biobanks
    • Cambon-Thomsen A. Science and society-rhe social and ethical issues of postgenomic human biobanks. Nat Rev Genet 2004; 5: 866-873
    • (2004) Nat Rev Genet , vol.5 , pp. 866-873
    • Cambon-Thomsen, A.1
  • 4
    • 80051948016 scopus 로고    scopus 로고
    • Ethical aspects of human biobanks: A systematic review
    • Budimir D, Polasek O, Marusic A, et al. Ethical aspects of human biobanks: a systematic review. Croat Med J 2011; 52: 262-279
    • (2011) Croat Med J , vol.52 , pp. 262-279
    • Budimir, D.1    Polasek, O.2    Marusic, A.3
  • 5
    • 17944366421 scopus 로고    scopus 로고
    • Expanding the ethical analysis of biobanks
    • Rothstein MA. Expanding the ethical analysis of biobanks. J Law Med Ethics 2005; 33: 89-101
    • (2005) J Law Med Ethics , vol.33 , pp. 89-101
    • Rothstein, M.A.1
  • 7
    • 0038450134 scopus 로고    scopus 로고
    • Polymorphic sequence variants in medicine: A challenge and an opportunity
    • Hodgson SV, Popat S. Polymorphic sequence variants in medicine: a challenge and an opportunity. Clin Med 2003; 3: 260-264
    • (2003) Clin Med , vol.3 , pp. 260-264
    • Hodgson, S.V.1    Popat, S.2
  • 8
    • 85012480728 scopus 로고    scopus 로고
    • The $1000 genome: Ethical and legal issues in whole genome sequencing of individuals
    • Robertson JA. The $1000 genome: ethical and legal issues in whole genome sequencing of individuals. Am J Bioeth 2003; 3: 35-42
    • (2003) Am J Bioeth , vol.3 , pp. 35-42
    • Robertson, J.A.1
  • 9
    • 58149242554 scopus 로고    scopus 로고
    • Ethics and biobanks
    • Hansson MG. Ethics and biobanks. Br J Cancer 2009; 100: 8-12
    • (2009) Br J Cancer , vol.100 , pp. 8-12
    • Hansson, M.G.1
  • 11
    • 84888610885 scopus 로고    scopus 로고
    • World Medical Association Declaration of Helsinki: Ethical principles for medical research involving human subjects
    • Helsinki Do. World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA 2013; 310: 2191-2194
    • (2013) JAMA , vol.310 , pp. 2191-2194
    • Helsinki, D.O.1
  • 12
    • 38449089111 scopus 로고    scopus 로고
    • The uneasy ethical and legal underpinnings of large-scale genomic biobanks
    • Greely HAT: The uneasy ethical and legal underpinnings of large-scale genomic biobanks Annu Rev Genom Hum Genet 2007 8 343-364
    • (2007) Annu Rev Genom Hum Genet , vol.8 , pp. 343-364
    • Greely, H.A.T.1
  • 15
    • 84859922074 scopus 로고    scopus 로고
    • The tension between data sharing and the protection of privacy in genomics research
    • Kaye J. The tension between data sharing and the protection of privacy in genomics research. Annu Rev Genom Hum Genet 2012; 13: 415-431
    • (2012) Annu Rev Genom Hum Genet , vol.13 , pp. 415-431
    • Kaye, J.1
  • 16
    • 84859566974 scopus 로고    scopus 로고
    • Managing incidental findings and research results in genomic research involving biobanks and archived data sets
    • Wolf SM, Crock BN, Van Ness B, 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    Van Ness, B.3
  • 17
    • 44949095629 scopus 로고    scopus 로고
    • Understanding incidental findings in the context of genetics and genomics
    • Cho MK. Understanding incidental findings in the context of genetics and genomics. J Law Med Ethics 2008; 36: 208-212
    • (2008) J Law Med Ethics , vol.36 , pp. 208-212
    • Cho, M.K.1
  • 18
    • 44949128231 scopus 로고    scopus 로고
    • Incidental findings in genetics research using archived DNA
    • Clayton EW. Incidental findings in genetics research using archived DNA. J Law Med Ethics 2008; 36: 286-291
    • (2008) J Law Med Ethics , vol.36 , pp. 286-291
    • Clayton, E.W.1
  • 19
    • 80053373293 scopus 로고    scopus 로고
    • Is informed consent broken
    • Henderson GE. Is informed consent broken? Am J Med Sci 2011; 342: 267-272
    • (2011) Am J Med Sci , vol.342 , pp. 267-272
    • Henderson, G.E.1
  • 20
    • 38549085235 scopus 로고    scopus 로고
    • Research ethics and the challenge of whole-genome sequencing
    • McGuire AL, Caulfield T, Cho MK. Research ethics and the challenge of whole-genome sequencing. Nat rev Genet 2008; 9: 152-156
    • (2008) Nat Rev Genet , vol.9 , pp. 152-156
    • McGuire, A.L.1    Caulfield, T.2    Cho, M.K.3
  • 21
    • 79952121275 scopus 로고    scopus 로고
    • Cochrane Update 'Scoping the scope' of a cochrane review
    • Armstrong R, Hall BJ, Doyle J, Waters E. Cochrane Update. 'Scoping the scope' of a cochrane review. J Public Health 2011; 33: 147-150
    • (2011) J Public Health , vol.33 , pp. 147-150
    • Armstrong, R.1    Hall, B.J.2    Doyle, J.3    Waters, E.4
  • 24
    • 33646948630 scopus 로고    scopus 로고
    • Research on stored biological samples: Views of African American and White American cancer patients
    • Pentz RD, Billot L, Wendler D. Research on stored biological samples: views of African American and White American cancer patients. Am J Med Genet 2006; 140: 733-739
    • (2006) Am J Med Genet , vol.140 , pp. 733-739
    • Pentz, R.D.1    Billot, L.2    Wendler, D.3
  • 25
    • 56049124576 scopus 로고    scopus 로고
    • Patients' views on identifiability of samples and informed consent for genetic research
    • Hull SC, Sharp RR, Botkin JR, et al. Patients' views on identifiability of samples and informed consent for genetic research. Am J Bioeth 2008; 8: 62-70
    • (2008) Am J Bioeth , vol.8 , pp. 62-70
    • Hull, S.C.1    Sharp, R.R.2    Botkin, J.R.3
  • 26
    • 64049115093 scopus 로고    scopus 로고
    • Obtaining fresh' consent for genetic research with biological samples archived 10 years ago
    • Vermeulen E, Schmidt MK, Aaronson NK, Kuenen M, van Leeuwen FE. Obtaining fresh' consent for genetic research with biological samples archived 10 years ago. Eur J Cancer 2009b; 45: 1168-1174
    • (2009) Eur J Cancer , vol.45 , pp. 1168-1174
    • Vermeulen, E.1    Schmidt, M.K.2    Aaronson, N.K.3    Kuenen, M.4    Van Leeuwen, F.E.5
  • 27
    • 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
    • Vermeulen E, Schmidt MK, Aaronson NK, et al. 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 2009a; 62: 275-278
    • (2009) J Clin Pathol , vol.62 , pp. 275-278
    • Vermeulen, E.1    Schmidt, M.K.2    Aaronson, N.K.3
  • 28
    • 3543141747 scopus 로고    scopus 로고
    • Informed consent and biobanks: A population-based study of attitudes towards tissue donation for genetic research
    • Hoeyer K, Olofsson BO, Mjorndal T, Lynoe N. Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research. Scand J Public Health 2004; 32: 224-229
    • (2004) Scand J Public Health , vol.32 , pp. 224-229
    • Hoeyer, K.1    Olofsson, B.O.2    Mjorndal, T.3    Lynoe, N.4
  • 29
    • 34147147584 scopus 로고    scopus 로고
    • Perceptions of potential donors in the Swedish public towards information and consent procedures in relation to use of human tissue samples in biobanks: A population-based study
    • Kettis-Lindblad A, Ring L, Viberth E, Hansson MG. Perceptions of potential donors in the Swedish public towards information and consent procedures in relation to use of human tissue samples in biobanks: a population-based study. Scand J Public Health 2007; 35: 148-156
    • (2007) Scand J Public Health , vol.35 , pp. 148-156
    • Kettis-Lindblad, A.1    Ring, L.2    Viberth, E.3    Hansson, M.G.4
  • 31
    • 33748207767 scopus 로고    scopus 로고
    • Genetic research and donation of tissue samples to biobanks What do potential sample donors in the Swedish general public think
    • Kettis-Lindblad A, Ring L, Viberth E, Hansson MG. Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think? Eur J Public Health 2006; 16: 433-440
    • (2006) Eur J Public Health , vol.16 , pp. 433-440
    • Kettis-Lindblad, A.1    Ring, L.2    Viberth, E.3    Hansson, M.G.4
  • 32
    • 33646163023 scopus 로고    scopus 로고
    • Human tissue samples and ethics-Attitudes of the general public in Sweden to biobank research
    • Nilstun T, Hermeren G. Human tissue samples and ethics-Attitudes of the general public in Sweden to biobank research. Med Health Care Philos 2006; 9: 81-86
    • (2006) Med Health Care Philos , vol.9 , pp. 81-86
    • Nilstun, T.1    Hermeren, G.2
  • 33
    • 77955660006 scopus 로고    scopus 로고
    • Public and biobank participant attitudes toward genetic research participation and data sharing
    • Lemke AA, Wolf WA, Hebert-Beirne J, Smith ME. Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genom 2010; 13: 368-377
    • (2010) Public Health Genom , vol.13 , pp. 368-377
    • Lemke, A.A.1    Wolf, W.A.2    Hebert-Beirne, J.3    Smith, M.E.4
  • 34
    • 84878759050 scopus 로고    scopus 로고
    • Patients' willingness to participate in a breast cancer biobank at screening mammogram
    • Lee CI, Bassett LW, Leng M, et al. Patients' willingness to participate in a breast cancer biobank at screening mammogram. Breast Cancer Res Treat 2012; 136: 899-906
    • (2012) Breast Cancer Res Treat , vol.136 , pp. 899-906
    • Lee, C.I.1    Bassett, L.W.2    Leng, M.3
  • 35
    • 84873345553 scopus 로고    scopus 로고
    • Beliefs and attitudes towards participating in genetic research-A population based cross-sectional study
    • Kerath SM, Klein G, Kern M, et al. Beliefs and attitudes towards participating in genetic research-A population based cross-sectional study. BMC Public Health 2013; 13: 114
    • (2013) BMC Public Health , vol.13 , pp. 114
    • Kerath, S.M.1    Klein, G.2    Kern, M.3
  • 36
    • 84859988417 scopus 로고    scopus 로고
    • Biobank participation and returning research results: Perspectives from a deliberative engagement in South Side Chicago
    • Lemke AA, Halverson C, Ross LF. Biobank participation and returning research results: perspectives from a deliberative engagement in South Side Chicago. Am J Med Genet 2012; 158A: 1029-1037
    • (2012) Am J Med Genet , vol.158 A , pp. 1029-1037
    • Lemke, A.A.1    Halverson, C.2    Ross, L.F.3
  • 37
    • 80052411221 scopus 로고    scopus 로고
    • Achieving online consent to participation in large-scale gene-environment studies: A tangible destination
    • Wood F, Kowalczuk J, Elwyn G, Mitchell C, Gallacher J. Achieving online consent to participation in large-scale gene-environment studies: a tangible destination. J Med Ethics 2011; 37: 487-492
    • (2011) J Med Ethics , vol.37 , pp. 487-492
    • Wood, F.1    Kowalczuk, J.2    Elwyn, G.3    Mitchell, C.4    Gallacher, J.5
  • 39
    • 80053386296 scopus 로고    scopus 로고
    • Public perspectives regarding data-sharing practices in genomics research
    • Haga SB, O'Daniel J. Public Perspectives Regarding Data-Sharing Practices in Genomics Research. Public Health Genom 2011; 14: 319-324
    • (2011) Public Health Genom , vol.14 , pp. 319-324
    • Haga, S.B.1    O'Daniel, J.2
  • 42
    • 33646164690 scopus 로고    scopus 로고
    • 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. Views of female breast cancer patients who donated biologic samples regarding storage and use of samples for genetic research. Clin Genet 2006; 69: 393-398
    • (2006) Clin Genet , vol.69 , pp. 393-398
    • Kaphingst, K.A.1    Janoff, J.M.2    Harris, L.N.3    Emmons, K.M.4
  • 43
    • 84861225247 scopus 로고    scopus 로고
    • Informed consent for whole genome sequencing: A qualitative analysis of participant expectations and perceptions of risks, benefits, and harms
    • Tabor HK, Stock J, Brazg T, et al. Informed consent for whole genome sequencing: a qualitative analysis of participant expectations and perceptions of risks, benefits, and harms. Am J Med Genet 2012; 158A: 1310-1319
    • (2012) Am J Med Genet , vol.158 A , pp. 1310-1319
    • Tabor, H.K.1    Stock, J.2    Brazg, T.3
  • 44
    • 63149161777 scopus 로고    scopus 로고
    • Substance use disorder genetic research: Investigators and participants grapple with the ethical issues
    • Coors ME, Raymond KM. Substance use disorder genetic research: investigators and participants grapple with the ethical issues. Psychiatr Genet 2009; 19: 83-90
    • (2009) Psychiatr Genet , vol.19 , pp. 83-90
    • Coors, M.E.1    Raymond, K.M.2
  • 45
    • 77954825531 scopus 로고    scopus 로고
    • Ethnocultural community leaders' views and perceptions on biobanks and population specific genomic research: A qualitative research study
    • Godard B, Ozdemir V, Fortin M, Egalite N. Ethnocultural community leaders' views and perceptions on biobanks and population specific genomic research: a qualitative research study. Public Understand Sci 2010; 19: 469-485
    • (2010) Public Understand Sci , vol.19 , pp. 469-485
    • Godard, B.1    Ozdemir, V.2    Fortin, M.3    Egalite, N.4
  • 46
    • 85027937468 scopus 로고    scopus 로고
    • Personal privacy, public benefits, and biobanks: A conjoint analysis of policy priorities and public perceptions
    • Pullman D, Etchegary H, Gallagher K, et al. Personal privacy, public benefits, and biobanks: a conjoint analysis of policy priorities and public perceptions. Gen Med 2012; 14: 229-235
    • (2012) Gen Med , vol.14 , pp. 229-235
    • Pullman, D.1    Etchegary, H.2    Gallagher, K.3
  • 47
    • 84867497183 scopus 로고    scopus 로고
    • Biobanking, consent, and control: A survey of Albertans on key research ethics issues
    • Caulfield T, Rachul C, Nelson E. Biobanking, consent, and control: a survey of Albertans on key research ethics issues. Biopreserv Biobank 2012; 10: 433-438
    • (2012) Biopreserv Biobank , vol.10 , pp. 433-438
    • Caulfield, T.1    Rachul, C.2    Nelson, E.3
  • 48
    • 84875638193 scopus 로고    scopus 로고
    • Community-based partnership to identify keys to biospecimen research participation
    • Erwin DO, Moysich K, Kiviniemi MT, et al. Community-based partnership to identify keys to biospecimen research participation. J Cancer Educ 2013; 28: 43-51
    • (2013) J Cancer Educ , vol.28 , pp. 43-51
    • Erwin, D.O.1    Moysich, K.2    Kiviniemi, M.T.3
  • 49
    • 80755139422 scopus 로고    scopus 로고
    • To share or not to share: A randomized trial of consent for data sharing in genome research
    • McGuire AL, Oliver JM, Slashinski MJ, et al. To share or not to share: a randomized trial of consent for data sharing in genome research. Gen Med 2011; 13: 948-955
    • (2011) Gen Med , vol.13 , pp. 948-955
    • McGuire, A.L.1    Oliver, J.M.2    Slashinski, M.J.3
  • 50
    • 57349167685 scopus 로고    scopus 로고
    • Public expectations for return of results from large-cohort genetic research
    • Murphy J, Scott J, Kaufman D, Geller G, LeRoy L, Hudson K. Public expectations for return of results from large-cohort genetic research. Am J Bioeth 2008; 8: 36-43
    • (2008) Am J Bioeth , vol.8 , pp. 36-43
    • Murphy, J.1    Scott, J.2    Kaufman, D.3    Geller, G.4    LeRoy, L.5    Hudson, K.6
  • 51
    • 84856722686 scopus 로고    scopus 로고
    • IRB perspectives on the return of individual results from genomic research
    • Dressler LG, Smolek S, Ponsaran R, et al. IRB perspectives on the return of individual results from genomic research. Gen Med 2012; 14: 215-222
    • (2012) Gen Med , vol.14 , pp. 215-222
    • Dressler, L.G.1    Smolek, S.2    Ponsaran, R.3
  • 52
    • 84859608971 scopus 로고    scopus 로고
    • Public preferences regarding the return of individual genetic research results: Findings from a qualitative focus group study
    • Bollinger JM, Scott J, Dvoskin R, Kaufman D. Public preferences regarding the return of individual genetic research results: findings from a qualitative focus group study. Gen Med 2012; 14: 451-457
    • (2012) Gen Med , vol.14 , pp. 451-457
    • Bollinger, J.M.1    Scott, J.2    Dvoskin, R.3    Kaufman, D.4
  • 53
    • 84857189818 scopus 로고    scopus 로고
    • Researchers' opinions towards the communication of results of biobank research: A survey study
    • Meulenkamp TM, Gevers SJK, Bovenberg JA, Smets EMA: Researchers' opinions towards the communication of results of biobank research: a survey study Eur J Hum Genet 2012 20 258-262
    • (2012) Eur J Hum Genet , vol.20 , pp. 258-262
    • Meulenkamp, T.M.1    Gevers, S.J.K.2    Bovenberg, J.A.3    Smets, E.M.A.4
  • 54
    • 77956628518 scopus 로고    scopus 로고
    • Researcher perspectives on disclosure of incidental findings in genetic research
    • Meacham MC, Starks H, Burke W, Edwards K. Researcher perspectives on disclosure of incidental findings in genetic research. J Empir Res Hum Res Ethics 2010; 5: 31-41
    • (2010) J Empir Res Hum Res Ethics , vol.5 , pp. 31-41
    • Meacham, M.C.1    Starks, H.2    Burke, W.3    Edwards, K.4
  • 55
    • 84870837938 scopus 로고    scopus 로고
    • Genetics specialists' perspectives on disclosure of genomic incidental findings in the clinical setting
    • Downing NR, Williams JK, Daack-Hirsch S, Driessnack M, Simon CM. Genetics specialists' perspectives on disclosure of genomic incidental findings in the clinical setting. Patient Educ Counsel 2013; 90: 133-138
    • (2013) Patient Educ Counsel , vol.90 , pp. 133-138
    • Downing, N.R.1    Williams, J.K.2    Daack-Hirsch, S.3    Driessnack, M.4    Simon, C.M.5
  • 58
    • 84879800223 scopus 로고    scopus 로고
    • A closer look at the recommended criteria for disclosing genetic results: Perspectives of medical genetic specialists, genomic researchers, and institutional review board chairs
    • Brandt DS, Shinkunas L, Hillis SL, et al. A closer look at the recommended criteria for disclosing genetic results: perspectives of medical genetic specialists, genomic researchers, and institutional review board chairs. J Genet Counsel 2013; 22: 544-553
    • (2013) J Genet Counsel , vol.22 , pp. 544-553
    • Brandt, D.S.1    Shinkunas, L.2    Hillis, S.L.3
  • 59
    • 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
  • 60
    • 38549099198 scopus 로고    scopus 로고
    • Biobanks and blanket consent: The proper place of the public good and public perception rationales
    • Caulfield T. Biobanks and blanket consent: the proper place of the public good and public perception rationales. Kings Law J 2007; 18: 209-226
    • (2007) Kings Law J , vol.18 , pp. 209-226
    • Caulfield, T.1
  • 61
    • 1842556267 scopus 로고    scopus 로고
    • Coding and consent: Moral challenges of the database project in Iceland
    • Arnason V. Coding and consent: moral challenges of the database project in Iceland. Bioethics 2004; 18: 27-49
    • (2004) Bioethics , vol.18 , pp. 27-49
    • Arnason, V.1
  • 62
    • 84901005679 scopus 로고    scopus 로고
    • Routes for breaching and protecting genetic privacy
    • Erlich Y, Narayanan A. Routes for breaching and protecting genetic privacy. Nat Rev Genet 2014; 15: 409-421
    • (2014) Nat Rev Genet , vol.15 , pp. 409-421
    • Erlich, Y.1    Narayanan, A.2
  • 63
  • 64
    • 29944440965 scopus 로고    scopus 로고
    • Implications of disclosing individual results of clinical research
    • Clayton EW, Ross LF. Implications of disclosing individual results of clinical research. JAMA 2006; 295: 37-38
    • (2006) JAMA , vol.295 , pp. 37-38
    • Clayton, E.W.1    Ross, L.F.2
  • 65
    • 0034767217 scopus 로고    scopus 로고
    • Genetic research on the UK population-do new principles need to be developed
    • Kaye J. Genetic research on the UK population-do new principles need to be developed? Trends Mol Med 2001; 7: 528-530
    • (2001) Trends Mol Med , vol.7 , pp. 528-530
    • Kaye, J.1


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.