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Volumn 11, Issue 1, 2015, Pages

Open consent, biobanking and data protection law: can open consent be ‘informed’ under the forthcoming data protection regulation?

Author keywords

Biobanks; Consent; Data protection; Data protection regulation; Genetics; Genomics; Open consent

Indexed keywords

BIOBANK; COMPUTER SECURITY; CONFIDENTIALITY; ETHICS; EUROPEAN UNION; GENETICS; GERMANY; HEALTH PERSONNEL ATTITUDE; HUMAN; INFORMED CONSENT; LEGISLATION AND JURISPRUDENCE; RESEARCH SUBJECT; RISK FACTOR; SOCIAL BEHAVIOR;

EID: 84975687679     PISSN: None     EISSN: 21957819     Source Type: Journal    
DOI: 10.1186/s40504-014-0020-9     Document Type: Article
Times cited : (47)

References (49)
  • 4
    • 21144455074 scopus 로고    scopus 로고
    • Informed Democratic Consent? The Case of the Icelandic Database’
    • Árnason, Vilhjálmur, and Garðar Árnason. 2004. Informed Democratic Consent? The Case of the Icelandic Database’. Trames 8: 164–177.
    • (2004) Trames , vol.8 , pp. 164-177
    • Árnason, V.1    Árnason, G.2
  • 7
    • 84975746240 scopus 로고    scopus 로고
    • Opinion 5/2004 on unsolicited communications for marketing purposes under Article 13 of Directive 2002/58/EC
    • Article 29 Data Protection Working Party. 2004b. Opinion 5/2004 on unsolicited communications for marketing purposes under Article 13 of Directive 2002/58/EC, WP 90.
    • (2004) WP , pp. 90
    • 29 Data Protection Working Party, A.1
  • 9
    • 84975754251 scopus 로고    scopus 로고
    • Opinion 4/2007 on the concept of personal data 01248/07/EN
    • Article 29 Data Protection Working Party. 2007a. Opinion 4/2007 on the concept of personal data 01248/07/EN, WP136.
    • (2007) WP136
    • 29 Data Protection Working Party, A.1
  • 10
    • 84955341156 scopus 로고    scopus 로고
    • Working Document on the processing of personal data relating to health in electronic health records (EHR)
    • Article 29 Data Protection Working Party. 2007b. Working Document on the processing of personal data relating to health in electronic health records (EHR), WP 131.
    • (2007) WP , pp. 131
    • 29 Data Protection Working Party, A.1
  • 14
    • 85082445333 scopus 로고    scopus 로고
    • An Overview of Directive 95/46/EC in Relation to Medical Research
    • Beyleveld D, (ed), Ashgate, Aldershot
    • Beyleveld, Deryck. 2004a. An Overview of Directive 95/46/EC in Relation to Medical Research. In The Data Protection Directive and Medical Research Across Europe, ed. Deryck Beyleveld et al., 5–23. Aldershot: Ashgate.
    • (2004) The Data Protection Directive and Medical Research Across Europe , pp. 5-23
    • Beyleveld, D.1
  • 15
    • 85082452612 scopus 로고    scopus 로고
    • The Duty to Provide Information to the Data Subject: Articles 10 and 11 of Directive 95/46/EC
    • Beyleveld D, (ed), Ashgate, Aldershot
    • Beyleveld, Deryck. 2004b. The Duty to Provide Information to the Data Subject: Articles 10 and 11 of Directive 95/46/EC. In The Data Protection Directive and Medical Research Across Europe, ed. Deryck Beyleveld et al., 69–89. Aldershot: Ashgate.
    • (2004) The Data Protection Directive and Medical Research Across Europe , pp. 69-89
    • Beyleveld, D.1
  • 18
    • 84873967011 scopus 로고    scopus 로고
    • The Body as Data? Biobank regulation via the ‘Back Door’ of Data Protection Law, Law
    • Bygrave, Lee. 2010. The Body as Data? Biobank regulation via the ‘Back Door’ of Data Protection Law, Law. Innovation and Technology 2(1): 1–25.
    • (2010) Innovation and Technology , vol.2 , Issue.1 , pp. 1-25
    • Bygrave, L.1
  • 19
    • 0035318620 scopus 로고    scopus 로고
    • Solidarity and Equity: new ethical frameworks for genetic research
    • Chadwick, Ruth, and Kare Berg. 2001. Solidarity and Equity: new ethical frameworks for genetic research. Nature Reviews Genetics 2: 318–321.
    • (2001) Nature Reviews Genetics , vol.2 , pp. 318-321
    • Chadwick, R.1    Berg, K.2
  • 21
    • 84902583614 scopus 로고    scopus 로고
    • Proposal for a Regulation of the European Parliament and of the Council on the protection of individuals with regard to the processing of personal data and on the free movement of such data (General Data Protection Regulation)
    • European Commission. 2012a. Proposal for a Regulation of the European Parliament and of the Council on the protection of individuals with regard to the processing of personal data and on the free movement of such data (General Data Protection Regulation). COM(2012) 11 final.
    • (2012) COM(2012) 11 final
  • 22
    • 84975737072 scopus 로고    scopus 로고
    • Impact Assessment Accompanying the General Data Protection Regulation
    • European Commission. 2012b. Impact Assessment Accompanying the General Data Protection Regulation. SEC(2012)72 final.
    • (2012) SEC(2012)72 final
  • 25
    • 84880238616 scopus 로고    scopus 로고
    • Genetic Data and the Data Protection Regulation: Anonymity, multiple subjects and a prohibitionary logic regarding genetic data?
    • Hallinan, Dara, Michael Friedewald, and Paul De Hert. 2013. Genetic Data and the Data Protection Regulation: Anonymity, multiple subjects and a prohibitionary logic regarding genetic data? Computer Law and Security Review 29(4): 317–329.
    • (2013) Computer Law and Security Review , vol.29 , Issue.4 , pp. 317-329
    • Hallinan, D.1    Friedewald, M.2    De Hert, P.3
  • 26
    • 33344475590 scopus 로고    scopus 로고
    • Should donors be allowed to give broad consent to future biobank research?
    • Hansson, Mats, Joakim Dillner, Bartram Claus, Carlson Joyce, and Gert Helgesson. 2006. Should donors be allowed to give broad consent to future biobank research? Lancet Oncology 7: 266–69.
    • (2006) Lancet Oncology , vol.7 , pp. 266-269
    • Hansson, M.1    Dillner, J.2    Claus, B.3    Joyce, C.4    Helgesson, G.5
  • 29
    • 84908973845 scopus 로고    scopus 로고
    • Abandoning informed consent: the case of genetic research in population collections
    • Tutton R, Corrigan O, (eds), Routledge, London
    • Kaye, Jane. 2004. Abandoning informed consent: the case of genetic research in population collections. In Genetic Databases: Socio-ethical issues in the collection and use of DNA, ed. Richard Tutton and Oonagh Corrigan, 117–139. London: Routledge.
    • (2004) Genetic Databases: Socio-ethical issues in the collection and use of DNA , pp. 117-139
    • Kaye, J.1
  • 31
    • 3242876939 scopus 로고    scopus 로고
    • Exploring the Public Understanding of Basic Genetic Concepts
    • Lanie, A, T Jayaratne, and E Petty. 2004. Exploring the Public Understanding of Basic Genetic Concepts. Journal of Genetic Counseling 13(4): 305–320.
    • (2004) Journal of Genetic Counseling , vol.13 , Issue.4 , pp. 305-320
    • Lanie, A.1    Jayaratne, T.2    Petty, E.3
  • 34
    • 84927085513 scopus 로고    scopus 로고
    • The medium and the message: tissue samples, genetic information and data protection legislation
    • Widdows H, Mullen C, (eds), Cambridge University Press, Cambridge
    • Manson, Neil. 2009. The medium and the message: tissue samples, genetic information and data protection legislation. In The Governance of Genetic Information: Who Decides? ed. Heather Widdows and Caroline Mullen, 15–36. Cambridge: Cambridge University Press.
    • (2009) The Governance of Genetic Information: Who Decides? , pp. 15-36
    • Manson, N.1
  • 37
    • 71949131197 scopus 로고    scopus 로고
    • Broad” consent, exceptions to consent and the question of using biological samples for research purposes different from the initial collection purpose
    • Petrini, Carlo. 2010. “Broad” consent, exceptions to consent and the question of using biological samples for research purposes different from the initial collection purpose. Social Science and Medicine 70: 217–220.
    • (2010) Social Science and Medicine , vol.70 , pp. 217-220
    • Petrini, C.1
  • 39
  • 40
    • 84877983179 scopus 로고    scopus 로고
    • Privacy Self-Management and the Consent Dilemma
    • Solove, Daniel. 2012. Privacy Self-Management and the Consent Dilemma. Harvard Law Review 126: 1880–2004.
    • (2012) Harvard Law Review , vol.126 , pp. 1880-2004
    • Solove, D.1
  • 41
    • 84862895096 scopus 로고    scopus 로고
    • The Necessity of Broad Consent and Complementary Regulations for the Protection of Personal Data in Biobanks: What Can We Learn from the German Case
    • Taupitz, J, and J Weigel. 2012. The Necessity of Broad Consent and Complementary Regulations for the Protection of Personal Data in Biobanks: What Can We Learn from the German Case. Public Health Genomics 15: 263–271.
    • (2012) Public Health Genomics , vol.15 , pp. 263-271
    • Taupitz, J.1    Weigel, J.2
  • 45
    • 84975692714 scopus 로고    scopus 로고
    • Accessed 05 June 2014
    • Biobank, UK. 2010. UK Biobank Participant Information Leaflet. http://www.ukbiobank.ac.uk/wp-content/uploads/2011/06/Participant_information_leaflet.pdf?phpMyAdmin=trmKQlYdjjnQIgJ%2CfAzikMhEnx6. Accessed 05 June 2014.
    • (2010) UK Biobank Participant Information Leaflet
    • Biobank, U.K.1
  • 46
    • 84975741610 scopus 로고    scopus 로고
    • Accessed 05 June 2014
    • Biobank, UK. 2013. Consent Form: UK Biobank. http://www.ukbiobank.ac.uk/wp-content/uploads/2011/06/Consent_form.pdf. Accessed 05 June 2014.
    • (2013) Consent Form: UK Biobank
    • Biobank, U.K.1
  • 49
    • 84975739336 scopus 로고    scopus 로고
    • (last consulted 27.11.2013)
    • UK Biobank. 2013. FAQs. http://www.ukbiobank.ac.uk/all-faqs/ (last consulted 27.11.2013).
    • (2013) FAQs
    • UK Biobank1


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.