메뉴 건너뛰기




Volumn 29, Issue , 2016, Pages 119-137

Many Have It Wrong – Samples Do Contain Personal Data: The Data Protection Regulation as a Superior Framework to Protect Donor Interests in Biobanking and Genomic Research

Author keywords

Authoritative Source; Data Protection; Genetic Sample; Genetic Science; Personal Data

Indexed keywords


EID: 85048743236     PISSN: 23521902     EISSN: 23521910     Source Type: Book Series    
DOI: 10.1007/978-3-319-33525-4_6     Document Type: Chapter
Times cited : (11)

References (40)
  • 1
    • 84883535405 scopus 로고    scopus 로고
    • Rechtsrahmen und Rechtsprobleme bei Biobanken
    • Albers, Marion. 2013. Rechtsrahmen und Rechtsprobleme bei Biobanken. Medizinrecht 31(8): 483–491.
    • (2013) Medizinrecht , vol.31 , Issue.8 , pp. 483-491
    • Albers, M.1
  • 2
    • 85006279978 scopus 로고    scopus 로고
    • Harvard cracks DNA storage, crams 700 terabytes of data into a single gram
    • August
    • Anthony, Sebastian. 2012. Harvard cracks DNA storage, crams 700 terabytes of data into a single gram. Extremetech, August 17. http://www.extremetech.com/extreme/134672-harvard-cracks-dna-storage-crams-700-terabytes-of-data-into-a-single-gram. Accessed 03 July 2015.
    • (2012) Extremetech
    • Anthony, S.1
  • 3
    • 85126041000 scopus 로고    scopus 로고
    • Opinion 4/2007 on the concept of personal data
    • Article 29 Data Protection Working Party. 2007. Opinion 4/2007 on the concept of personal data. WP136.
    • (2007) WP136
  • 5
    • 3042681436 scopus 로고    scopus 로고
    • Australian Law Reform Commission and Australian Health Ethics Committee
    • Australian Law Reform Commission and Australian Health Ethics Committee. 2003. Essentially yours: The protection of human genetic information in Australia. http://www.alrc.gov.au/sites/default/files/pdfs/publications/ALRC96_vol2.pdf. Accessed 03 July 2015.
    • (2003) Essentially Yours: The Protection of Human Genetic Information in Australia
  • 6
    • 85126061912 scopus 로고    scopus 로고
    • An overview of directive 95/46/EC in relation to medical research
    • ed. Deryck Beyleveld et al., Aldershot: Ashgate
    • Beyleveld, Deryck. 2004. 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., 8–21. Aldershot: Ashgate.
    • (2004) The Data Protection Directive and Medical Research across Europe , pp. 8-21
    • Deryck, B.1
  • 8
    • 84873967011 scopus 로고    scopus 로고
    • The body as data? Biobank regulation via the ‘Back Door’ of data protection 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) Law, Innovation and Technology , vol.2 , Issue.1 , pp. 1-25
    • Lee, B.1
  • 9
    • 85126021508 scopus 로고    scopus 로고
    • Church, George, Yuan Gao and Sriram Kosuri. 2012. Next generation digital information storage in DNA. Science Express. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.299.5153& rep=rep1&type=pdf. Accessed 03 July 2015.
    • Church, George, Yuan Gao and Sriram Kosuri. 2012. Next generation digital information storage in DNA. Science Express. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.299.5153& rep=rep1&type=pdf. Accessed 03 July 2015.
  • 10
    • 85126004414 scopus 로고    scopus 로고
    • Clinton, William. 2000. Remarks made by the president::: on the completion of the first survey of the entire human genome project. The White House Office of the Press Secretary. June 26. https://www.genome.gov/10001356. Accessed 03 July 2015.
    • Clinton, William. 2000. Remarks made by the president::: on the completion of the first survey of the entire human genome project. The White House Office of the Press Secretary. June 26. https://www.genome.gov/10001356. Accessed 03 July 2015.
  • 12
    • 85126009030 scopus 로고    scopus 로고
    • European Commission. 1992. Amended proposal for a Council Directive on the protection of individuals with regard to the processing of personal data and on the free movement of such data. COM (92) 422 final. http://aei.pitt.edu/10375/1/10375.pdf. Accessed 03 July 2015.
    • European Commission. 1992. Amended proposal for a Council Directive on the protection of individuals with regard to the processing of personal data and on the free movement of such data. COM (92) 422 final. http://aei.pitt.edu/10375/1/10375.pdf. Accessed 03 July 2015.
  • 13
    • 85126065413 scopus 로고    scopus 로고
    • European Commission. 2010. A comprehensive approach on personal data protection in the European Union, COM (2010) 609 final. http://ec.europa.eu/justice/news/consulting_public/0006/com_2010_609_en.pdf. Accessed 03 July 2015.
    • European Commission. 2010. A comprehensive approach on personal data protection in the European Union, COM (2010) 609 final. http://ec.europa.eu/justice/news/consulting_public/0006/com_2010_609_en.pdf. Accessed 03 July 2015.
  • 14
    • 85126025907 scopus 로고    scopus 로고
    • European Commission. 2012. 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. http://ec.europa.eu/justice/data-protection/document/review2012/com_2012_ 11_en.pdf. Accessed 03 July 2015.
    • European Commission. 2012. 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. http://ec.europa.eu/justice/data-protection/document/review2012/com_2012_ 11_en.pdf. Accessed 03 July 2015.
  • 15
    • 85125993670 scopus 로고    scopus 로고
    • S. and Marper v United Kingdom, no
    • European Court of Human Rights. 2008. S. and Marper v United Kingdom, no. 30562/04 and 30566/04.
    • (2008) 30562/04 and 30566/04
  • 16
    • 85125997448 scopus 로고    scopus 로고
    • European Parliament and European Council. 1995. On the Protection of individuals with regard to the processing of personal data and on the free movement of such data. Directive 95/46/EC. http://eur-lex.europa.eu/legal-content/EN/TXT/HTML/?uri=CELEX:31995L0046&from=EN. Accessed 03 July 2015.
    • European Parliament and European Council. 1995. On the Protection of individuals with regard to the processing of personal data and on the free movement of such data. Directive 95/46/EC. http://eur-lex.europa.eu/legal-content/EN/TXT/HTML/?uri=CELEX:31995L0046&from=EN. Accessed 03 July 2015.
  • 20
    • 34147170728 scopus 로고    scopus 로고
    • Privacy, data protection and law enforcement. Opacity of the individual and transparency of power
    • ed. E. Claes, A. Duff, and S. Gutwirth, Antwerp: Intersentia
    • Gutwirth, Serge, and Paul De Hert. 2006. Privacy, data protection and law enforcement. Opacity of the individual and transparency of power. In Privacy and the criminal law, ed. E. Claes, A. Duff, and S. Gutwirth, 61–104. Antwerp: Intersentia.
    • (2006) Privacy and the Criminal Law , pp. 61-104
    • Gutwirth, S.1    Hert, P.D.2
  • 21
    • 85126021841 scopus 로고    scopus 로고
    • Hallinan, Dara and Michael Friedewald. 2015. Open consent, biobanking and data protection law: Can open consent be ‘informed’ under the forthcoming data protection regulation? Life Sciences, Society and Policy 11(1). doi: 10.1186/s40504-014-0020-9. See http://lsspjournal.springeropen.com/
    • Hallinan, Dara and Michael Friedewald. 2015. Open consent, biobanking and data protection law: Can open consent be ‘informed’ under the forthcoming data protection regulation? Life Sciences, Society and Policy 11(1). doi: 10.1186/s40504-014-0020-9. See http://lsspjournal.springeropen.com/
  • 22
    • 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 & Security Review 29(4): 317–329.
    • (2013) Computer Law & Security Review , vol.29 , Issue.4 , pp. 317-329
    • Hallinan, D.1    Friedewald, M.2    de Hert, P.3
  • 25
    • 85126003071 scopus 로고    scopus 로고
    • Human Tissue Authority. 2014b. Code of practise 9: Research. https://www.hta.gov.uk/sites/default/files/Code_of_practice:9_-_Research.pdf. Accessed 03 July 2015.
    • Human Tissue Authority. 2014b. Code of practise 9: Research. https://www.hta.gov.uk/sites/default/files/Code_of_practice:9_-_Research.pdf. Accessed 03 July 2015.
  • 26
    • 85126039758 scopus 로고    scopus 로고
    • Illumina. 2015. HiSeq X ten specification sheet. http://www.illumina.com/content/dam/illumina-marketing/documents/products/datasheets/datasheet-hiseq-x-ten.pdf. Accessed 03 July 2015.
    • (2015) Hiseq X Ten Specification Sheet
  • 27
    • 85126005743 scopus 로고    scopus 로고
    • International Human Genome Consortium et al. 2001. Initial sequencing and analysis of the human genome. Nature 409: 860–921.
    • International Human Genome Consortium et al. 2001. Initial sequencing and analysis of the human genome. Nature 409: 860–921.
  • 28
    • 85125992609 scopus 로고    scopus 로고
    • International Standards Organisation. 1993. Information technology—Vocabulary—Part 1: Fundamental terms. ISO 2382–1. Revised by ISO/IEC 2382–1, 2015. http://www.iso.org/iso/home/store/catalogue_ics/catalogue_detail_ics.htm?csnumber=63598. Accessed 03 July 2015.
    • International Standards Organisation. 1993. Information technology—Vocabulary—Part 1: Fundamental terms. ISO 2382–1. Revised by ISO/IEC 2382–1, 2015. http://www.iso.org/iso/home/store/catalogue_ics/catalogue_detail_ics.htm?csnumber=63598. Accessed 03 July 2015.
  • 30
    • 84927085513 scopus 로고    scopus 로고
    • The medium and the message: Tissue samples, genetic information and data protection legislation
    • Cambridge: Cambridge University Press
    • 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. Widdows Heather and Mullen Caroline, 15–37. Cambridge: Cambridge University Press.
    • (2009) The Governance of Genetic Information: Who Decides? Ed. Widdows Heather and Mullen Caroline , pp. 15-37
    • Manson, N.1
  • 31
    • 84862661551 scopus 로고    scopus 로고
    • National Health and Medical Research Council. 2010. Biobanks information paper. https://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/e110_biobanks_information_ paper_140520.pdf. Accessed 03 July 2015.
    • (2010) Biobanks Information Paper
  • 33
    • 46249107022 scopus 로고    scopus 로고
    • Nuffield Council on Bioethics. 2007. The forensic use of bioinformation: ethical issues. http://nuffieldbioethics.org/wp-content/uploads/The-forensic-use-of-bioinformation-ethical-issues.pdf. Accessed 03 July 2015.
    • (2007) The Forensic Use of Bioinformation: Ethical Issues
  • 34
    • 51449112152 scopus 로고    scopus 로고
    • Biobanking for better healthcare
    • Riegman, Peter, et al. 2008. Biobanking for better healthcare. Molecular Oncology 2: 213–222.
    • (2008) Molecular Oncology , vol.2 , pp. 213-222
    • Riegman, P.1
  • 37
    • 85126058673 scopus 로고    scopus 로고
    • UK Parliament. 2004a. Human Tissue Act 2004. http://www.legislation.gov.uk/ukpga/2004/30/pdfs/ukpga_20040030_en.pdf. Accessed 03 July 2015.
    • (2004) Human Tissue Act , vol.2004
    • Parliament, U.K.1
  • 38
    • 85126061592 scopus 로고    scopus 로고
    • UK Parliament. 2004b. Human Tissue Act 2004 Explanatory Note. http://www.legislation.gov.uk/ukpga/2004/30/notes. Last consulted 20.06. Accessed 03 July 2015.
    • UK Parliament. 2004b. Human Tissue Act 2004 Explanatory Note. http://www.legislation.gov.uk/ukpga/2004/30/notes. Last consulted 20.06. Accessed 03 July 2015.
  • 39
    • 0003884211 scopus 로고
    • Natural selection: Domains
    • New York: Oxford University Press
    • Willimas, George. 1992. Natural selection: Domains, levels and challenges. New York: Oxford University Press.
    • (1992) Levels and Challenges
    • Willimas, G.1


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.