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Volumn 19, Issue 2, 2017, Pages

The effect of the general data protection regulation on medical research

Author keywords

Anonymity; Data protection; Data reporting; Informatics; Privacy preserving protocols; Pseudonymity; Research ethics; Untraceability

Indexed keywords

CLASSIFICATION; HUMAN; INFORMATION PROCESSING; INFORMATION SCIENCE; MEDICAL RESEARCH; PRIVACY; RESEARCH ETHICS; COMPUTER SECURITY; ETHICS; METHODOLOGY; PROCEDURES; STANDARDS;

EID: 85014841011     PISSN: None     EISSN: 14388871     Source Type: Journal    
DOI: 10.2196/jmir.7108     Document Type: Article
Times cited : (116)

References (37)
  • 3
    • 84901253710 scopus 로고    scopus 로고
    • Legislative regulation and ethical governance of medical research in different European Union countries
    • May 10
    • Veerus P, Lexchin J, Hemminki E. Legislative regulation and ethical governance of medical research in different European Union countries. J Med Ethics 2013 May 10;10:1. [doi: 10.1136/medethics-2012-101282]
    • (2013) J Med Ethics , vol.10 , pp. 1
    • Veerus, P.1    Lexchin, J.2    Hemminki, E.3
  • 4
    • 85049314877 scopus 로고    scopus 로고
    • [accessed 2017-02-04] [WebCite Cache ID 6o1vKzZ9R]
    • Reform of EU data protection rules.: European Commission URL: http://ec.europa.eu/justice/data-protection/reform/index-en.htm [accessed 2017-02-04] [WebCite Cache ID 6o1vKzZ9R]
    • Reform of EU Data Protection Rules
  • 6
    • 85014817189 scopus 로고    scopus 로고
    • [accessed 2017-02-04] [WebCite Cache ID 6o1vwOM95]
    • Marr B. The 5 V's of Big Data Internet.: Data Science Central; 2015. URL: http://www.datasciencecentral.com/profiles/blogs/the-5-v-s-of-big-data-by-bernard-marr [accessed 2017-02-04] [WebCite Cache ID 6o1vwOM95]
    • (2015) The 5 v'S of Big Data Internet
    • Marr, B.1
  • 7
  • 8
    • 84963992724 scopus 로고    scopus 로고
    • The proposed Data Protection Regulation and its potential impact on social sciences research in the UK
    • Stevens L. The proposed Data Protection Regulation and its potential impact on social sciences research in the UK. European Data Protection Law Review 2015;1(2):97-112.
    • (2015) European Data Protection Law Review , vol.1 , Issue.2 , pp. 97-112
    • Stevens, L.1
  • 9
    • 80052573480 scopus 로고    scopus 로고
    • Active choice but not too active: Public perspectives on biobank consent models
    • Sep [FREE Full text] [Medline: 21555942]
    • Simon C, L'heureux J, Murray J, Winokur P, Weiner G, Newbury E, et al. Active choice but not too active: public perspectives on biobank consent models. Genet Med 2011 Sep;13(9):821-831 [FREE Full text] [doi: 10.1097/GIM.0b013e31821d2f88] [Medline: 21555942]
    • (2011) Genet Med , vol.13 , Issue.9 , pp. 821-831
    • Simon, C.1    L'Heureux, J.2    Murray, J.3    Winokur, P.4    Weiner, G.5    Newbury, E.6
  • 10
    • 60149102137 scopus 로고    scopus 로고
    • Broadening consent-and diluting ethics?
    • Hofmann B. Broadening consent-and diluting ethics? J Med Ethics 2009;35:129. [doi: 10.1136/jme.2008.024851]
    • (2009) J Med Ethics , vol.35 , pp. 129
    • Hofmann, B.1
  • 11
    • 80655139255 scopus 로고    scopus 로고
    • Can broad consent be informed consent?
    • Sheehan M. Can broad consent be informed consent? Public Health Ethics 2011;4(3):226-235. [doi: 10.1093/phe/phr020]
    • (2011) Public Health Ethics , vol.4 , Issue.3 , pp. 226-235
    • Sheehan, M.1
  • 12
    • 85014811850 scopus 로고    scopus 로고
    • Governing the spaces in-between: Law and legitimacy in new health technologies
    • Flear ML, Farrell A, Hervey TK, Murphy T, editors. Oxford: Oxford University Press
    • Laurie G. Governing the spaces in-between: law and legitimacy in new health technologies. In: Flear ML, Farrell A, Hervey TK, Murphy T, editors. European Law and New Health Technologies. Oxford: Oxford University Press; 2013:193.
    • (2013) European Law and New Health Technologies , pp. 193
    • Laurie, G.1
  • 13
    • 84882449721 scopus 로고    scopus 로고
    • Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?
    • Steinbekk K, Myskja B, Solberg B. Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem? Eur J Hum Genet 2013;21:897-902. [doi: 10.1038/ejhg.2012.282]
    • (2013) Eur J Hum Genet , vol.21 , pp. 897-902
    • Steinbekk, K.1    Myskja, B.2    Solberg, B.3
  • 14
    • 78649271884 scopus 로고
    • Handyside v United Kingdom [accessed 2017-02-15] [WebCite Cache ID 6oIhGWzAg]
    • Handyside v United Kingdom.: European Court of Human Rights; 1976. URL: http://hudoc.echr.coe.int/eng [accessed 2017-02-15] [WebCite Cache ID 6oIhGWzAg]
    • (1976) European Court of Human Rights
  • 15
    • 33845426499 scopus 로고    scopus 로고
    • Tackling community concerns about commercialisation and genetic research: A modest interdisciplinary proposal
    • Haddow G, Laurie G, Cunningham-Burley S, Hunter K. Tackling community concerns about commercialisation and genetic research: A modest interdisciplinary proposal. Soc Sci Med 2007;64:272-282.
    • (2007) Soc Sci Med , vol.64 , pp. 272-282
    • Haddow, G.1    Laurie, G.2    Cunningham-Burley, S.3    Hunter, K.4
  • 16
    • 84993947692 scopus 로고    scopus 로고
    • Scottish Health Informatics Programme [accessed 2017-02-04] [WebCite Cache ID 6o1y81sOm]
    • Aitken M. SHIP public engagement: summary of focus groups.: Scottish Health Informatics Programme; 2011. URL: http://www.academia.edu/2702142/SHIP-Public-Engagement-Summary-of-Focus-Groups [accessed 2017-02-04] [WebCite Cache ID 6o1y81sOm]
    • (2011) SHIP Public Engagement: Summary of Focus Groups
    • Aitken, M.1
  • 17
    • 84994505203 scopus 로고    scopus 로고
    • London: Wellcome Trust [accessed 2017-02-04] [WebCite Cache ID 6o1yFukoQ]
    • Ipsos MORI. The one-way mirror: Public attitudes to commercial access to health data. London: Wellcome Trust; 2016. URL: https://www.ipsos-mori.com/researchpublications/publications/1803/Commercial-access-to-health-data.aspx [accessed 2017-02-04] [WebCite Cache ID 6o1yFukoQ]
    • (2016) The One-way Mirror: Public Attitudes to Commercial Access to Health Data
  • 18
    • 60749109484 scopus 로고    scopus 로고
    • Brussels: European Commission [accessed 2017-02-04] [WebCite Cache ID 6o1yPd6De]
    • Opinion 4/2007 on the concept of personal data. Brussels: European Commission; 2007. URL: http://ec.europa.eu/justice/data-protection/article-29/documentation/opinion-recommendation/files/2007/wp136-en.pdf [accessed 2017-02-04] [WebCite Cache ID 6o1yPd6De]
    • (2007) Opinion 4/2007 on the Concept of Personal Data
  • 19
    • 0034160731 scopus 로고    scopus 로고
    • Breach of confidence: Anonymised information. R. V. Department of Health ex parte Source Informatics Ltd
    • [Medline 11787501]
    • Grubb A. Breach of confidence: anonymised information. R. v. Department of Health ex parte Source Informatics Ltd. Med Law Rev 2000;8(1):115-120. [Medline: 11787501]
    • (2000) Med Law Rev , vol.8 , Issue.1 , pp. 115-120
    • Grubb, A.1
  • 20
    • 79958708534 scopus 로고    scopus 로고
    • [accessed 2017-02-04] [WebCite Cache ID 6o1yv6syC]
    • Common Services Agency v Scottish Information Commissioner. 2008. URL: https://www.publications.parliament.uk/pa/ld200708/ldjudgmt/jd080709/comm-1.htm [accessed 2017-02-04] [WebCite Cache ID 6o1yv6syC]
    • (2008) Common Services Agency v Scottish Information Commissioner
  • 21
    • 84856148882 scopus 로고    scopus 로고
    • Pittsburgh: Carnegie Mellon University; [accessed 2017-02-04] [WebCite Cache ID 6o1z6bf2W]
    • Sweeney L. Simple demographics often identify people uniquely. Pittsburgh: Carnegie Mellon University; 2000. URL: http://dataprivacylab.org/projects/identifiability/paper1.pdf [accessed 2017-02-04] [WebCite Cache ID 6o1z6bf2W]
    • (2000) Simple Demographics Often Identify People Uniquely
    • Sweeney, L.1
  • 22
    • 85014843114 scopus 로고    scopus 로고
    • [accessed 2017-02-04] [WebCite Cache ID 6o1zGxIZu]
    • care.data hangs on engagement. 2015. URL: http://www.digitalhealth.net/2015/10/caldicott-care-data-hangs-on-engagement/[accessed 2017-02-04] [WebCite Cache ID 6o1zGxIZu]
    • (2015) Care.data Hangs on Engagement
  • 23
    • 85014820523 scopus 로고    scopus 로고
    • [accessed 2017-02-04] [WebCite Cache ID 6o1zYZB6Q]
    • NHS England to close care.data programme following Caldicott Review.: National Health Executive; 2016. URL: http://www.nationalhealthexecutive.com/Health-Care-News/nhs-england-to-close-caredata-programme-following-caldicott-review [accessed 2017-02-04] [WebCite Cache ID 6o1zYZB6Q]
    • (2016) NHS England to Close Care.data Programme Following Caldicott Review
  • 24
    • 84880198414 scopus 로고    scopus 로고
    • London: Information Commissioner's Office; [accessed 2017-02-05] [WebCite Cache ID 6o3QttPbL]
    • Anonymisation: managing data protection risk code of practice. London: Information Commissioner's Office; 2012. URL: https://ico.org.uk/for-organisations/guide-to-data-protection/anonymisation/[accessed 2017-02-05] [WebCite Cache ID 6o3QttPbL]
    • (2012) Anonymisation: Managing Data Protection Risk Code of Practice
  • 25
    • 85014815513 scopus 로고    scopus 로고
    • A review of evidence relating to harm resulting from uses of health and biomedical data
    • [accessed 2017-02-05] [WebCite Cache ID 6o3R6X2yU]
    • Laurie G, Jones K, Stevens L, Dobbs C. A review of evidence relating to harm resulting from uses of health and biomedical data.: Nuffield Council on Bioethics; 2014. URL: http://nuffieldbioethics.org/wp-content/uploads/A-Review-of-Evidence-Relating-to-Harms-Resulting-from-Uses-of-Health-and-Biomedical-Data-FINAL.pdf [accessed 2017-02-05] [WebCite Cache ID 6o3R6X2yU]
    • (2014) Nuffield Council on Bioethics
    • Laurie, G.1    Jones, K.2    Stevens, L.3    Dobbs, C.4
  • 26
    • 85014833451 scopus 로고    scopus 로고
    • [accessed 2017-02-05] [WebCite Cache ID 6o3RAFMW8]
    • Data protection and research in the European Union.: European Forum for Good Clinical Practice; 2015. URL: http://www.efgcp.eu/downloads/DP%20and%20Research%20in%20EU-HD-Final-06%2010%2015.pdf [accessed 2017-02-05] [WebCite Cache ID 6o3RAFMW8]
    • (2015) Data Protection and Research in the European Union
  • 27
    • 84925957965 scopus 로고    scopus 로고
    • The social licence for research: Why care. Data ran into trouble
    • Carter P, Laurie G, Dixon-Woods M. The social licence for research: why care.data ran into trouble. J Med Ethics 2015:1. [doi: 10.1136/medethics-2014-102374]
    • (2015) J Med Ethics , pp. 1
    • Carter, P.1    Laurie, G.2    Dixon-Woods, M.3
  • 28
    • 85014867488 scopus 로고    scopus 로고
    • Theresa May's "great repeal bill": What's going to happen and when?
    • Oct 02 [accessed 2017-02-05] [WebCite Cache ID 6o3RSMQSB]
    • Mason R. Theresa May's "great repeal bill": what's going to happen and when?.: The Guardian; 2016 Oct 02. URL: https://www.theguardian.com/politics/2016/oct/02/theresa-may-great-repeal-bill-eu-british-law [accessed 2017-02-05] [WebCite Cache ID 6o3RSMQSB]
    • (2016) The Guardian
    • Mason, R.1
  • 29
    • 14644407414 scopus 로고    scopus 로고
    • Ethics, audit, and research: All shades of grey
    • Feb 26 [FREE Full text] [Medline: 15731146]
    • Wade D. Ethics, audit, and research: all shades of grey. BMJ 2005 Feb 26;330(7489):468-471 [FREE Full text] [doi: 10.1136/bmj.330.7489.468] [Medline: 15731146]
    • (2005) BMJ , vol.330 , Issue.7489 , pp. 468-471
    • Wade, D.1
  • 30
    • 85014808745 scopus 로고    scopus 로고
    • Google knows your ills
    • May
    • Hodson H. Google knows your ills. New Scientist 2016 May;230(3072):22-23. [doi: 10.1016/S0262-4079(16)30809-0]
    • (2016) New Scientist , vol.230 , Issue.3072 , pp. 22-23
    • Hodson, H.1
  • 31
    • 29244468875 scopus 로고    scopus 로고
    • Improving acceptance of computerized prescribing alerts in ambulatory care
    • [FREE Full text] [Medline: 16221941]
    • Shah NR, Seger AC, Seger DL, Fiskio JM, Kuperman GJ, Blumenfeld B, et al. Improving acceptance of computerized prescribing alerts in ambulatory care. J Am Med Inform Assoc 2006;13(1):5-11 [FREE Full text] [doi: 10.1197/jamia.M1868] [Medline: 16221941]
    • (2006) J Am Med Inform Assoc , vol.13 , Issue.1 , pp. 5-11
    • Shah, N.R.1    Seger, A.C.2    Seger, D.L.3    Fiskio, J.M.4    Kuperman, G.J.5    Blumenfeld, B.6
  • 32
    • 85014830597 scopus 로고    scopus 로고
    • [accessed 2017-02-05] [WebCite Cache ID 6o3Rl0VHd]
    • ICO probes Google DeepMind patient data-sharing deal with NHS Hospital Trust Internet.: ComputerWeekly.com; 2016. URL: http://www.computerweekly.com/news/450296175/ICO-probes-Google-DeepMind-patient-data-sharing-deal-with-NHS-Hospital-Trust [accessed 2017-02-05] [WebCite Cache ID 6o3Rl0VHd]
    • (2016) ICO Probes Google DeepMind Patient Data-sharing Deal with NHS Hospital Trust Internet
  • 33
    • 84877635071 scopus 로고    scopus 로고
    • London: Department of Health; [accessed 2017-02-05] [WebCite Cache ID 6o3SQDyrv]
    • Caldicott F. Information: To share or not to share? The Information Governance Review. London: Department of Health; 2013. URL: https://www.gov.uk/government/uploads/system/uploads/attachment-data/file/192572/2900774-InfoGovernance-accv2.pdf [accessed 2017-02-05] [WebCite Cache ID 6o3SQDyrv]
    • (2013) Information: To Share or Not to Share? the Information Governance Review
    • Caldicott, F.1
  • 34
    • 84941121243 scopus 로고    scopus 로고
    • Unpatients-why patients should own their medical data
    • Sep [Medline: 26348958]
    • Kish L, Topol E. Unpatients-why patients should own their medical data. Nat Biotechnol 2015 Sep;33(9):921-924. [doi: 10.1038/nbt.3340] [Medline: 26348958]
    • (2015) Nat Biotechnol , vol.33 , Issue.9 , pp. 921-924
    • Kish, L.1    Topol, E.2
  • 35
    • 85014871895 scopus 로고    scopus 로고
    • [accessed 2017-02-05] [WebCite Cache ID 6o3SaMf6q]
    • Cross-border health project epSOS: what has it achieved?.: European Commission; 2014. URL: https://ec.europa.eu/digital-single-market/en/news/cross-border-health-project-epsos-what-has-it-achieved [accessed 2017-02-05] [WebCite Cache ID 6o3SaMf6q]
    • (2014) Cross-border Health Project EpSOS: What Has It Achieved?
  • 37
    • 84962254401 scopus 로고    scopus 로고
    • Ethics review for international data-intensive research
    • Mar 25 [FREE Full text] [Medline: 27013718]
    • Dove ES, Townend D, Meslin EM, Bobrow M, Littler K, Nicol D, et al. Ethics review for international data-intensive research. Science 2016 Mar 25;351(6280):1399-1400 [FREE Full text] [doi: 10.1126/science.aad5269] [Medline: 27013718]
    • (2016) Science , vol.351 , Issue.6280 , pp. 1399-1400
    • Dove, E.S.1    Townend, D.2    Meslin, E.M.3    Bobrow, M.4    Littler, K.5    Nicol, D.6


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.