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Volumn 15, Issue 7, 2017, Pages

Genes, cells, and biobanks: Yes, there’s still a consent problem

Author keywords

[No Author keywords available]

Indexed keywords

BIOBANK; CONTROLLED STUDY; GOVERNMENT; HUMAN; MEDICAL INFORMATION; NORMAL HUMAN; PERSONALIZED MEDICINE; UNITED KINGDOM; UNITED STATES; BIOETHICS; CELL LINE; ECONOMICS; ETHICS; GENE; INFORMED CONSENT; LEGISLATION AND JURISPRUDENCE; MEDICAL RESEARCH; MEDICOLEGAL ASPECT; PATIENT RIGHT; PRIVACY; PUBLIC OPINION; SOCIAL DISCRIMINATION; STANDARDS; TECHNOLOGY; TRENDS; TRUST;

EID: 85026783738     PISSN: 15449173     EISSN: 15457885     Source Type: Journal    
DOI: 10.1371/journal.pbio.2002654     Document Type: Article
Times cited : (87)

References (78)
  • 1
    • 84872826516 scopus 로고    scopus 로고
    • Characterizing biobank organizations in the US: results from a national survey
    • Jan, 2335154
    • Henderson GE, Cadigan RJ, Edwards TP, Conlon I, Nelson AG, Evans JP, et al. Characterizing biobank organizations in the US: results from a national survey. Genome Medicine. 2013Jan25;5(1):3. doi: 10.1186/gm407 23351549
    • (2013) Genome Medicine , vol.5 , Issue.1 , pp. 3
    • Henderson, G.E.1    Cadigan, R.J.2    Edwards, T.P.3    Conlon, I.4    Nelson, A.G.5    Evans, J.P.6
  • 2
  • 3
    • 84975680130 scopus 로고    scopus 로고
    • Park A. Time. 12 Mar 2009. Available from
    • Park A. 10 ideas changing the world right now: Biobanks. Time. 12 Mar 2009. Available from: http://content.time.com/time/specials/packages/article/0,28804,1884779_1884782_1884766,00.html
    • (2009) 10 ideas changing the world right now: Biobanks.
  • 4
    • 80053402730 scopus 로고    scopus 로고
    • Biobankonomics: developing a sustainable business model approach for the formation of a human tissue biobank
    • Ja
    • Vaught J, Rogers J, Carolin T, Compton C, Biobankonomics: developing a sustainable business model approach for the formation of a human tissue biobank. Journal of the National Cancer Institute. 2011Jan1(42):24–31.
    • (2011) Journal of the National Cancer Institute , vol.1 , Issue.42 , pp. 24-31
    • Vaught, J.1    Rogers, J.2    Carolin, T.3    Compton, C.4
  • 5
    • 84924413329 scopus 로고    scopus 로고
    • Obama's precision medicine initiative
    • Mar, 2575140
    • Terry SF, Obama's precision medicine initiative. Genetic Testing and Molecular Biomarkers. 2015Mar1;19(3):113–4. doi: 10.1089/gtmb.2015.1563 25751403
    • (2015) Genetic Testing and Molecular Biomarkers , vol.19 , Issue.3 , pp. 113-114
    • Terry, S.F.1
  • 6
    • 85026785228 scopus 로고    scopus 로고
    • 26 May 2016. Available from
    • National Institutes of Health. NIH funds biobank to support Precision Medicine Initiative Cohort Program. 26 May 2016. Available from: https://www.nih.gov/news-events/news-releases/nih-funds-biobank-support-precision-medicine-initiative-cohort-program
    • (2016) NIH funds biobank to support Precision Medicine Initiative Cohort Program.
  • 7
    • 85026784295 scopus 로고    scopus 로고
    • UK Biobank. Available from
    • UK Biobank. About UK Biobank. UK Biobank. 2016. Available from: http://www.ukbiobank.ac.uk/about-biobank-uk/
    • (2016) About UK Biobank. UK Biobank.
  • 8
    • 84896048352 scopus 로고    scopus 로고
    • Biobanks containing clinical specimens: defining characteristics, policies, and practices
    • Ma
    • Edwards T, Cadigan RJ, Evans JP, Henderson GE, Biobanks containing clinical specimens: defining characteristics, policies, and practices. Clinical Biochemistry. 2014Mar31;47(4):245–51.
    • (2014) Clinical Biochemistry , vol.47 , Issue.4 , pp. 245-251
    • Edwards, T.1    Cadigan, R.J.2    Evans, J.P.3    Henderson, G.E.4
  • 9
    • 84866057075 scopus 로고    scopus 로고
    • Biobanks, consent and claims of consensus
    • Sep, 2293616
    • Master Z, Nelson E, Murdoch B, Caulfield T, Biobanks, consent and claims of consensus. Nature Methods. 2012Sep1;9(9):885–8. doi: 10.1038/nmeth.2142 22936169
    • (2012) Nature Methods , vol.9 , Issue.9 , pp. 885-888
    • Master, Z.1    Nelson, E.2    Murdoch, B.3    Caulfield, T.4
  • 10
    • 85026787800 scopus 로고    scopus 로고
    • Federal Register. Federal Policy for the Protection of Human Subjects. 19 Jan 2017. Available from
    • Federal Register. Federal Policy for the Protection of Human Subjects. 19 Jan 2017. Available from: https://www.federalregister.gov/documents/2017/01/19/2017-01058/federal-policy-for-the-protection-of-human-subjects
  • 11
    • 84975687679 scopus 로고    scopus 로고
    • Open consent, biobanking and data protection law: can open consent be ‘informed’ under the forthcoming data protection regulation?
    • Ja
    • Hallinan D, Friedewald M, Open consent, biobanking and data protection law: can open consent be ‘informed’ under the forthcoming data protection regulation?Life Sciences, Society and Policy. 2015Jan24;11(1):1.
    • (2015) Life Sciences, Society and Policy , vol.11 , Issue.1 , pp. 1
    • Hallinan, D.1    Friedewald, M.2
  • 12
    • 33749600034 scopus 로고    scopus 로고
    • Body of research—ownership and use of human tissue
    • Oct, 1703564
    • Charo RA, Body of research—ownership and use of human tissue. New England Journal of Medicine. 2006Oct12;355(15):1517–9. doi: 10.1056/NEJMp068192 17035644
    • (2006) New England Journal of Medicine , vol.355 , Issue.15 , pp. 1517-1519
    • Charo, R.A.1
  • 13
    • 85026747718 scopus 로고    scopus 로고
    • Wagner JK. Property Rights and the Human Body. Genomics Law Report. June 11, 2014. Available from
    • Wagner JK. Property Rights and the Human Body. Genomics Law Report. June 11, 2014. Available from: http://www.genomicslawreport.com/index.php/2014/06/11/property-rights-and-the-human-body/
  • 14
    • 84883209509 scopus 로고    scopus 로고
    • Policy uncertainty, sequencing, and cell lines. G3: Genes, Genomes
    • Aug
    • Caulfield T, McGuire AL, Policy uncertainty, sequencing, and cell lines. G3: Genes, Genomes, Genetics. 2013Aug1;3(8):1205–7.
    • (2013) Genetics , vol.3 , Issue.8 , pp. 1205-1207
    • Caulfield, T.1    McGuire, A.L.2
  • 15
    • 84884216754 scopus 로고    scopus 로고
    • Data sharing, biobanks and informed consent: a research paradox
    • Allen C, Joly Y, Moreno PG, Data sharing, biobanks and informed consent: a research paradox. McGill JL & Health. 2013;7:85.
    • (2013) McGill JL & Health , vol.7 , pp. 85
    • Allen, C.1    Joly, Y.2    Moreno, P.G.3
  • 16
    • 85026754153 scopus 로고    scopus 로고
    • Official Journal of the European Union. Regulation (EU) 2016/679 of the European Parliament and of the Council. EUR-Lex. 27 Apr 2016. Available from
    • Official Journal of the European Union. Regulation (EU) 2016/679 of the European Parliament and of the Council. EUR-Lex. 27 Apr 2016. Available from: http://eur-lex.europa.eu/legal-content/EN/TXT/?uri=CELEX%3A32016R0679
  • 17
    • 85021853413 scopus 로고    scopus 로고
    • Hodge J, Gostin L. Revamping the US Federal Common Rule. JAMA (Internet). 22 February 2017. Available from
    • Hodge J, Gostin L. Revamping the US Federal Common Rule. JAMA (Internet). 22 February 2017. Available from: http://jamanetwork.com/journals/jama/fullarticle/2606525
  • 18
    • 85026751603 scopus 로고    scopus 로고
    • Lynch HF. Final Common Rule Revisions Just Published. Harvard Law: Bill of Health. 18 Jan 2017. Available from
    • Lynch HF. Final Common Rule Revisions Just Published. Harvard Law: Bill of Health. 18 Jan 2017. Available from: http://blogs.harvard.edu/billofhealth/2017/01/18/final-common-rule-revisions-just-published/
  • 20
    • 38449089111 scopus 로고    scopus 로고
    • The uneasy ethical and legal underpinnings of large-scale genomic biobanks
    • Sep, 1755034
    • Greely HT, The uneasy ethical and legal underpinnings of large-scale genomic biobanks. Annu. Rev. Genomics Hum. Genet. 2007Sep22;8:343–64. doi: 10.1146/annurev.genom.7.080505.115721 17550341
    • (2007) Annu. Rev. Genomics Hum. Genet , vol.8 , pp. 343-364
    • Greely, H.T.1
  • 21
    • 85016161424 scopus 로고    scopus 로고
    • Controversial patient-consent proposal left out of research-ethics reforms
    • Jan, 2812826
    • Reardon S, Controversial patient-consent proposal left out of research-ethics reforms. Nature. 2017Jan;541(7638):449. doi: 10.1038/nature.2017.21330 28128266
    • (2017) Nature , vol.541 , Issue.7638 , pp. 449
    • Reardon, S.1
  • 22
    • 85026766216 scopus 로고    scopus 로고
    • U.S. abandons controversial consent proposal on using human research samples
    • Jan,. [Internet]. Available from
    • Kaiser J, U.S. abandons controversial consent proposal on using human research samples. Science [Internet]. 2017Jan18. Available from: http://www.sciencemag.org/news/2017/01/update-us-abandons-controversial-consent-proposal-using-human-research-samples
    • (2017) Science
    • Kaiser, J.1
  • 23
    • 41849095185 scopus 로고    scopus 로고
    • Research ethics recommendations for whole-genome research: consensus statement
    • 1836625
    • Caulfield T, McGuire AL, Cho M, Buchanan JA, Burgess MM, Danilczyk U, et al. Research ethics recommendations for whole-genome research: consensus statement. PLoS Biol. 2008;6:3:e73. doi: 10.1371/journal.pbio.0060073 18366258
    • (2008) PLoS Biol , vol.6 , Issue.3 , pp. e73
    • Caulfield, T.1    McGuire, A.L.2    Cho, M.3    Buchanan, J.A.4    Burgess, M.M.5    Danilczyk, U.6
  • 25
    • 84983339907 scopus 로고    scopus 로고
    • Informed consent in international normative texts and biobanking policies Seeking the boundaries of broad consent
    • Moreno PG, Joly Y, Informed consent in international normative texts and biobanking policies Seeking the boundaries of broad consent. Medical Law International. 2016; 15(4):216–45.
    • (2016) Medical Law International , vol.15 , Issue.4 , pp. 216-245
    • Moreno, P.G.1    Joly, Y.2
  • 26
    • 84978492400 scopus 로고    scopus 로고
    • Understanding the Public’s Reservations about Broad Consent and Study-By-Study Consent for Donations to a Biobank: Results of a National Survey
    • 2741501
    • De Vries RG, Tomlinson T, Kim HM, Krenz C, Haggerty D, Ryan KA, et al. Understanding the Public’s Reservations about Broad Consent and Study-By-Study Consent for Donations to a Biobank: Results of a National Survey. PloS ONE. 2016;11:7:e0159113. doi: 10.1371/journal.pone.0159113 27415017
    • (2016) PloS ONE , vol.11 , Issue.7 , pp. e0159113
    • De Vries, R.G.1    Tomlinson, T.2    Kim, H.M.3    Krenz, C.4    Haggerty, D.5    Ryan, K.A.6
  • 28
    • 80052573480 scopus 로고    scopus 로고
    • Active choice but not too active: public perspectives on biobank consent models
    • Sep, 2155594
    • Simon CM, L'heureux J, Murray JC, Winokur P, Weiner G, Newbury E, et al. Active choice but not too active: public perspectives on biobank consent models. Genetics in Medicine. 2011Sep1;13(9):821–31. doi: 10.1097/GIM.0b013e31821d2f88 21555942
    • (2011) Genetics in Medicine , vol.13 , Issue.9 , pp. 821-831
    • Simon, C.M.1    L'heureux, J.2    Murray, J.C.3    Winokur, P.4    Weiner, G.5    Newbury, E.6
  • 29
    • 84977142902 scopus 로고    scopus 로고
    • A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States
    • Nov, 2658368
    • Garrison' NA, Sathe NA, Antommaria AH, Holm IA, Sanderson SC, Smith ME, et al. A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States. Genetics in Medicine. 2015Nov19;18(7):663–71. doi: 10.1038/gim.2015.138 26583683
    • (2015) Genetics in Medicine , vol.18 , Issue.7 , pp. 663-671
    • Garrison', N.A.1    Sathe, N.A.2    Antommaria, A.H.3    Holm, I.A.4    Sanderson, S.C.5    Smith, M.E.6
  • 30
    • 85012918005 scopus 로고    scopus 로고
    • Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US
    • Mar, 2819045
    • Sanderson SC, Brothers KB, Mercaldo ND, Clayton EW, Antommaria AH, Aufox SA, et al. Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US. The American Journal of Human Genetics. 2017Mar2;100(3):414–27. doi: 10.1016/j.ajhg.2017.01.021 28190457
    • (2017) The American Journal of Human Genetics , vol.100 , Issue.3 , pp. 414-427
    • Sanderson, S.C.1    Brothers, K.B.2    Mercaldo, N.D.3    Clayton, E.W.4    Antommaria, A.H.5    Aufox, S.A.6
  • 31
    • 84928059946 scopus 로고    scopus 로고
    • Scientists’ perspectives on consent in the context of biobanking research
    • May, 2507446
    • Master Z, Campo-Engelstein L, Caulfield T, Scientists’ perspectives on consent in the context of biobanking research. European Journal of Human Genetics. 2015May1;23(5):569–74. doi: 10.1038/ejhg.2014.143 25074466
    • (2015) European Journal of Human Genetics , vol.23 , Issue.5 , pp. 569-574
    • Master, Z.1    Campo-Engelstein, L.2    Caulfield, T.3
  • 32
    • 84940109895 scopus 로고    scopus 로고
    • The US National Biobank and (no) consensus on informed consent
    • Sep, 2630576
    • Master Z, The US National Biobank and (no) consensus on informed consent. The American Journal of Bioethics. 2015Sep2;15(9):63–5. doi: 10.1080/15265161.2015.1062170 26305760
    • (2015) The American Journal of Bioethics , vol.15 , Issue.9 , pp. 63-65
    • Master, Z.1
  • 33
    • 85026753410 scopus 로고    scopus 로고
    • Daley B, Cranley E. ‘Biorights’ rise: Donors demand control of their samples. Boston Globe. 10 Oct 2016. Available from
    • Daley B, Cranley E. ‘Biorights’ rise: Donors demand control of their samples. Boston Globe. 10 Oct 2016. Available from: https://www.bostonglobe.com/metro/2016/10/09/the-rise-biorights-donors-are-demanding-control-and-sometimes-cash-exchange-for-genetic-samples/jCbaQ2E5t6c0Qs1kcITMRM/story.html
  • 35
    • 85011371471 scopus 로고    scopus 로고
    • No regrets: Young adult patients in psychiatry report positive reactions to biobank participation
    • Jan, 2809582
    • Cunningham JL, Zanzi M, Willebrand M, Ekselius L, Ramklint M, No regrets: Young adult patients in psychiatry report positive reactions to biobank participation. BMC Psychiatry. 2017Jan17;17(1):21. doi: 10.1186/s12888-017-1199-0 28095825
    • (2017) BMC Psychiatry , vol.17 , Issue.1 , pp. 21
    • Cunningham, J.L.1    Zanzi, M.2    Willebrand, M.3    Ekselius, L.4    Ramklint, M.5
  • 37
    • 85026766870 scopus 로고    scopus 로고
    • Blakemore E. New Claims Prove the Henrietta Lacks Controversy Is Far From Over. Smithsonian. 15 Feb 2017. Available from
    • Blakemore E. New Claims Prove the Henrietta Lacks Controversy Is Far From Over. Smithsonian. 15 Feb 2017. Available from: http://www.smithsonianmag.com/smart-news/claims-henrietta-lacks-controversy-far-from-over-180962185/
  • 38
    • 85026749586 scopus 로고    scopus 로고
    • Jordan T. See the first photos of Oprah Winfrey in HBO's Henrietta Lacks movie. Entertainment Weekly. 22 Jan 2016. Available from
    • Jordan T. See the first photos of Oprah Winfrey in HBO's Henrietta Lacks movie. Entertainment Weekly. 22 Jan 2016. Available from: http://ew.com/tv/2016/12/22/oprah-winfrey-hbo-henrietta-lacks-movie/
  • 40
    • 79551652973 scopus 로고    scopus 로고
    • Waiting for the revolution
    • Feb, 2129295
    • Marshall E, Waiting for the revolution. Science. 2011Feb4;331(6017):526–9. doi: 10.1126/science.331.6017.526 21292950
    • (2011) Science , vol.331 , Issue.6017 , pp. 526-529
    • Marshall, E.1
  • 41
    • 84969217686 scopus 로고    scopus 로고
    • Confronting stem cell hype
    • May, 2717497
    • Caulfield T, Sipp D, Murry CE, Daley GQ, Kimmelman J, Confronting stem cell hype. Science. 2016May13;352(6287):776–7. doi: 10.1126/science.aaf4620 27174977
    • (2016) Science , vol.352 , Issue.6287 , pp. 776-777
    • Caulfield, T.1    Sipp, D.2    Murry, C.E.3    Daley, G.Q.4    Kimmelman, J.5
  • 42
    • 85026741572 scopus 로고    scopus 로고
    • Murray K. CNN. 9 Feb 2017. Available from
    • Murray K. Could we one day make babies from only skin cells? CNN. 9 Feb 2017. Available from: http://www.cnn.com/2017/02/09/health/embryo-skin-cell-ivg/index.html
    • (2017) Could we one day make babies from only skin cells?
  • 43
    • 85026760592 scopus 로고    scopus 로고
    • PR Newswire.PR Newswire. 22 Sep 2014. Available from
    • PR Newswire. Cell Line Development Market Worth $3.96 Billion by 2019. PR Newswire. 22 Sep 2014. Available from: http://www.prnewswire.com/news-releases/cell-line-development-market-worth-396-billion-by-2019-275982961.html
    • (2014) Cell Line Development Market Worth $3.96 Billion by 2019.
  • 44
    • 85026734987 scopus 로고    scopus 로고
    • Global Market Watch. MedGadget. 24 Feb 2017. Available from
    • Global Market Watch. Human Biobanking Ownership–Market To Witness a value of US$37.1 billion by 2020. MedGadget. 24 Feb 2017. Available from: http://www.medgadget.com/2017/02/human-biobanking-ownership-market-to-witness-a-value-of-us37-1-billion-by-2020.html
    • (2017) Human Biobanking Ownership–Market To Witness a value of US$37.1 billion by 2020.
  • 45
    • 77956415308 scopus 로고    scopus 로고
    • To the barricades!
    • 2081854
    • Greely HT, To the barricades!Am. J. Bioeth. 2010;10(9):1–2. doi: 10.1080/15265161.2010.494229 20818543
    • (2010) Am. J. Bioeth , vol.10 , Issue.9 , pp. 1-2
    • Greely, H.T.1
  • 46
    • 52049108289 scopus 로고    scopus 로고
    • Genetic exceptionalism. Too much of a good thing?
    • Jul, 1858068
    • Evans JP, Burke W, Genetic exceptionalism. Too much of a good thing?Genetics in Medicine. 2008Jul1;10(7):500–1. doi: 10.1097GIM.0b013e31817f280a 18580684
    • (2008) Genetics in Medicine , vol.10 , Issue.7 , pp. 500-501
    • Evans, J.P.1    Burke, W.2
  • 47
    • 38549099198 scopus 로고    scopus 로고
    • Biobanks and blanket consent: the proper place of the public good and public perception rationales
    • Ja
    • Caulfield T, Biobanks and blanket consent: the proper place of the public good and public perception rationales. King's Law Journal. 2007Jan1;18(2):209–26.
    • (2007) King's Law Journal , vol.18 , Issue.2 , pp. 209-226
    • Caulfield, T.1
  • 48
    • 0037990111 scopus 로고    scopus 로고
    • The impact of public opinion on public policy: A review and an agenda
    • Ma
    • Burstein P, The impact of public opinion on public policy: A review and an agenda. Political Research Quarterly. 2003Mar;56(1):29–40.
    • (2003) Political Research Quarterly , vol.56 , Issue.1 , pp. 29-40
    • Burstein, P.1
  • 49
    • 79956362136 scopus 로고    scopus 로고
    • Understanding the impact of commercialization on public support for scientific research: Is it about the funding source or the organization conducting research?
    • Critchley CR, Nicol D, Understanding the impact of commercialization on public support for scientific research: Is it about the funding source or the organization conducting research?Public Understanding of Science. 2009;20(3):347–66.
    • (2009) Public Understanding of Science , vol.20 , Issue.3 , pp. 347-366
    • Critchley, C.R.1    Nicol, D.2
  • 50
    • 84867497183 scopus 로고    scopus 로고
    • Biobanking, consent, and control: a survey of Albertans on key research ethics issues
    • Oct, 2484504
    • Caulfield T, Rachul C, Nelson E, Biobanking, consent, and control: a survey of Albertans on key research ethics issues. Biopreservation and Biobanking. 2012Oct1;10(5):433–8. doi: 10.1089/bio.2012.0029 24845044
    • (2012) Biopreservation and Biobanking , vol.10 , Issue.5 , pp. 433-438
    • Caulfield, T.1    Rachul, C.2    Nelson, E.3
  • 51
    • 85026781989 scopus 로고    scopus 로고
    • De Vries RG, Tomlinson T. Americans want a say in what happens to their donated blood and tissue in biobanks. The Conversation. 13 Jul 2016. Available from
    • De Vries RG, Tomlinson T. Americans want a say in what happens to their donated blood and tissue in biobanks. The Conversation. 13 Jul 2016. Available from: http://theconversation.com/americans-want-a-say-in-what-happens-to-their-donated-blood-and-tissue-in-biobanks-60681
  • 52
    • 84921777829 scopus 로고    scopus 로고
    • Moral Concerns and the Willingness to Donate to a Research Biobank
    • Jan, 2562604
    • Tomlinson T, et al. Moral Concerns and the Willingness to Donate to a Research Biobank. JAMA. 27Jan2015;313(4):417–419. doi: 10.1001/jama.2014.16363 25626040
    • (2015) JAMA , vol.313 , Issue.4 , pp. 417-419
    • Tomlinson, T.1
  • 53
    • 84942882111 scopus 로고    scopus 로고
    • . In:.:;. pp. –. Cham Springer International Publishin
    • Somiari SB, Somiari RI, Liu A, Pollard K, The future of biobanking: A conceptual look at how biobanks can respond to the growing human biospecimen needs of researchers. In: Biobanking in the 21st Century. Cham: Springer International Publishing; 2015. pp. 11–27.
    • (2015) Biobanking in the 21st Century , pp. 11-27
    • Somiari, S.B.1    Somiari, R.I.2    Liu, A.3    Pollard, K.4
  • 54
    • 85026780583 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. 2014. Article 3.2. Available fro
    • 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. 2014. Article 3.2. Available from: http://www.pre.ethics.gc.ca/pdf/eng/tcps2-2014/TCPS_2_FINAL_Web.pdf.
  • 55
    • 84941331033 scopus 로고    scopus 로고
    • Research participants’ perceptions and views on consent for biobank research: a review of empirical data and ethical analysis
    • Se
    • D’Abramo F, Schildmann J, Vollmann J, Research participants’ perceptions and views on consent for biobank research: a review of empirical data and ethical analysis. BMC medical ethics. 2015Sep9;16(1):60.
    • (2015) BMC medical ethics , vol.16 , Issue.1 , pp. 60
    • D’Abramo, F.1    Schildmann, J.2    Vollmann, J.3
  • 57
    • 85026759301 scopus 로고    scopus 로고
    • Pecci AW. Healthcare Data Breaches Up 40% Since 2015. HealthLeaders Media. 26 Feb 2017. Available from
    • Pecci AW. Healthcare Data Breaches Up 40% Since 2015. HealthLeaders Media. 26 Feb 2017. Available from: http://www.medpagetoday.com/practicemanagement/informationtechnology/63410
  • 58
    • 85026747256 scopus 로고    scopus 로고
    • Thinkstock. 79K Patients Affected by Emory Healthcare Data Breach.02 Mar 2017. Available from
    • Thinkstock. 79K Patients Affected by Emory Healthcare Data Breach. HealthITSecurity. 02 Mar 2017. Available from: http://healthitsecurity.com/news/79k-patients-affected-by-emory-healthcare-data-breach
    • (2017) Health IT Security.
  • 59
    • 85026762409 scopus 로고    scopus 로고
    • CBC News. Alberta Health Services notifies almost 13,000 patients of privacy breach. CBC News. 26 Sep 2016. Available from
    • CBC News. Alberta Health Services notifies almost 13,000 patients of privacy breach. CBC News. 26 Sep 2016. Available from: http://www.cbc.ca/news/canada/edmonton/alberta-health-services-notifies-almost-13-000-patients-of-privacy-breach-1.3779296
  • 60
    • 85026789419 scopus 로고    scopus 로고
    • Phoenix Strategic Perspectives Inc. 2016 Survey of Canadian on Privacy. Office of the Privacy Commissioner of Canada. Dec 2016. Available from
    • Phoenix Strategic Perspectives Inc. 2016 Survey of Canadian on Privacy. Office of the Privacy Commissioner of Canada. Dec 2016. Available from: https://www.priv.gc.ca/en/opc-actions-and-decisions/research/explore-privacy-research/2016/por_2016_12/?WT.ac=dpd-17&WT.ad=dpd-17
  • 61
    • 84944077701 scopus 로고    scopus 로고
    • Patient and public views about the security and privacy of Electronic Health Records (EHRs) in the UK: results from a mixed methods study
    • Oc
    • Papoutsi C, Reed JE, Marston C, Lewis R, Majeed A, Bell D, Patient and public views about the security and privacy of Electronic Health Records (EHRs) in the UK: results from a mixed methods study. BMC Medical Informatics and Secision Making. 2015Oct14;15(1):86.
    • (2015) BMC Medical Informatics and Secision Making , vol.15 , Issue.1 , pp. 86
    • Papoutsi, C.1    Reed, J.E.2    Marston, C.3    Lewis, R.4    Majeed, A.5    Bell, D.6
  • 62
    • 84994527395 scopus 로고    scopus 로고
    • Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies
    • Nov, 2783278
    • Aitken M, Jorre JD, Pagliari C, Jepson R, Cunningham-Burley S, Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies. BMC Medical Ethics. 2016Nov10;17(1):73. doi: 10.1186/s12910-016-0153-x 27832780
    • (2016) BMC Medical Ethics , vol.17 , Issue.1 , pp. 73
    • Aitken, M.1    Jorre, J.D.2    Pagliari, C.3    Jepson, R.4    Cunningham-Burley, S.5
  • 65
    • 84964968272 scopus 로고    scopus 로고
    • Global trends on fears and concerns of genetic discrimination: a systematic literature review
    • Apr, 2674023
    • Wauters A, Van Hoyweghen I, Global trends on fears and concerns of genetic discrimination: a systematic literature review. Journal of Human Genetics. 2016Apr1;61(4):275–82. doi: 10.1038/jhg.2015.151 26740237
    • (2016) Journal of Human Genetics , vol.61 , Issue.4 , pp. 275-282
    • Wauters, A.1    Van Hoyweghen, I.2
  • 67
    • 84939963789 scopus 로고    scopus 로고
    • Public awareness of genetic nondiscrimination laws in four states and perceived importance of life insurance protections
    • Jun, 2524249
    • Parkman AA, Foland J, Anderson B, Duquette D, Sobotka H, Lynn M, et al. Public awareness of genetic nondiscrimination laws in four states and perceived importance of life insurance protections. Journal of Genetic Counseling. 2015Jun1;24(3):512–21. doi: 10.1007/s10897-014-9771-y 25242499
    • (2015) Journal of Genetic Counseling , vol.24 , Issue.3 , pp. 512-521
    • Parkman, A.A.1    Foland, J.2    Anderson, B.3    Duquette, D.4    Sobotka, H.5    Lynn, M.6
  • 68
    • 84902117933 scopus 로고    scopus 로고
    • Public opinion on policy issues in genetics and genomics
    • Nov, 2420208
    • Almeling R, Gadarian SK, Public opinion on policy issues in genetics and genomics. Genetics in Medicine. 2013Nov7;16(6):491–4. doi: 10.1038/gim.2013.175 24202084
    • (2013) Genetics in Medicine , vol.16 , Issue.6 , pp. 491-494
    • Almeling, R.1    Gadarian, S.K.2
  • 69
    • 85026784554 scopus 로고    scopus 로고
    • Belluz J. A new bill would allow employers to see your genetic information–unless you pay a fine. Vox. 13 Mar 2017. Available from
    • Belluz J. A new bill would allow employers to see your genetic information–unless you pay a fine. Vox. 13 Mar 2017. Available from: http://www.vox.com/policy-and-politics/2017/3/13/14907250/hr1313-bill-genetic-information
  • 70
    • 84893195211 scopus 로고    scopus 로고
    • Policy recommendations for addressing privacy challenges associated with cell-based research and interventions
    • Fe
    • Ogbogu U, Burningham S, Ollenberger A, Calder K, Du L, El Emam K, et al. Policy recommendations for addressing privacy challenges associated with cell-based research and interventions. BMC Medical Ethics. 2014Feb3;15(1):7.
    • (2014) BMC Medical Ethics , vol.15 , Issue.1 , pp. 7
    • Ogbogu, U.1    Burningham, S.2    Ollenberger, A.3    Calder, K.4    Du, L.5    El Emam, K.6
  • 71
    • 85043584925 scopus 로고    scopus 로고
    • Clinical genomics, big data, and electronic medical records: reconciling patient rights with research when privacy and science collide
    • Ja
    • Kulynych J, Greely HT, Clinical genomics, big data, and electronic medical records: reconciling patient rights with research when privacy and science collide. Journal of Law and the Biosciences. 15Jan2017;1–39. doi: 10.1093/jlb/lsw061
    • (2017) Journal of Law and the Biosciences , pp. 1-39
    • Kulynych, J.1    Greely, H.T.2
  • 72
    • 85010755533 scopus 로고    scopus 로고
    • Dynamic Consent: a potential solution to some of the challenges of modern biomedical research
    • Jan, 2812261
    • Budin-Ljøsne I, Teare HJ, Kaye J, Beck S, Bentzen HB, Caenazzo L, et al. Dynamic Consent: a potential solution to some of the challenges of modern biomedical research. BMC Medical Ethics. 2017Jan25;18(1):4. doi: 10.1186/s12910-016-0162-9 28122615
    • (2017) BMC Medical Ethics , vol.18 , Issue.1 , pp. 4
    • Budin-Ljøsne, I.1    Teare, H.J.2    Kaye, J.3    Beck, S.4    Bentzen, H.B.5    Caenazzo, L.6
  • 73
    • 84921382128 scopus 로고    scopus 로고
    • Dynamic consent: a patient interface for twenty-first century research networks
    • Feb, 2480176
    • Kaye J, Whitley EA, Lund D, Morrison M, Teare H, Melham K, Dynamic consent: a patient interface for twenty-first century research networks. European Journal of Human Genetics. 2015Feb1;23(2):141–6. doi: 10.1038/ejhg.2014.71 24801761
    • (2015) European Journal of Human Genetics , vol.23 , Issue.2 , pp. 141-146
    • Kaye, J.1    Whitley, E.A.2    Lund, D.3    Morrison, M.4    Teare, H.5    Melham, K.6
  • 74
    • 84994910713 scopus 로고    scopus 로고
    • Donor’s support tool: Enabling informed secondary use of patient’s biomaterial and personal data
    • Jan, 2791938
    • Kondylakis H, Koumakis L, Hänold S, Nwankwo I, Forgó N, Marias K, et al. Donor’s support tool: Enabling informed secondary use of patient’s biomaterial and personal data. International Journal of Medical Informatics. 2017Jan31;97:282–92. doi: 10.1016/j.ijmedinf.2016.10.019 27919386
    • (2017) International Journal of Medical Informatics , vol.97 , pp. 282-292
    • Kondylakis, H.1    Koumakis, L.2    Hänold, S.3    Nwankwo, I.4    Forgó, N.5    Marias, K.6
  • 75
    • 84959464338 scopus 로고    scopus 로고
    • When children become adults: should biobanks re-contact?
    • 2688142
    • Giesbertz NA, Bredenoord AL, van Delden JJ, When children become adults: should biobanks re-contact?. PLoS Med. 2016;13:2:e1001959. doi: 10.1371/journal.pmed.1001959 26881426
    • (2016) PLoS Med , vol.13 , Issue.2 , pp. e1001959
    • Giesbertz, N.A.1    Bredenoord, A.L.2    van Delden, J.J.3
  • 77
    • 84867556865 scopus 로고    scopus 로고
    • Doerr A.Genomics Law Report. 2 Feb 2010. Available from
    • Doerr A. Newborn Blood Spot Litigation: 70 Days to Destroy 5+ Million Samples. Genomics Law Report. 2 Feb 2010. Available from: http://www.genomicslawreport.com/index.php/2010/02/02/newborn-blood-spot-litigation-70-days-to-destroy-5-million-samples/
    • (2010) Newborn Blood Spot Litigation: 70 Days to Destroy 5+ Million Samples.
  • 78
    • 84890564607 scopus 로고    scopus 로고
    • Finland on a road towards a modern legal biobanking infrastructure
    • Jan, 2398449
    • Soini S, Finland on a road towards a modern legal biobanking infrastructure. European journal of health law. 2013Jan1;20(3):289–94. 23984494
    • (2013) European journal of health law , vol.20 , Issue.3 , pp. 289-294
    • Soini, S.1


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.