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Anonymity and Privacy in Biobanking

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Biobanks and Tissue Research

Part of the book series: The International Library of Ethics, Law and Technology ((ELTE,volume 8))

Abstract

The present book chapter intends to provide a conceptual framework on the use and misuse of anonymity in biobank projects. The major point of departure is the comparative analysis of various functions of anonymity in the biomedical field. By applying this method, the authors also highlight differences between traditional and contemporary notions anonymity. The other aim of the chapter is to distinguish between the overlapping terms of confidentiality, anonymity, data protection, and privacy. While medical guidelines focus on the notion and technicalities of anonymisation, legal provisions are based on the pillars of data protection norms, such as the possibility of identification, and the attachment to the original goal of data processing. The difference between these approaches resulted in various forms of ambiguities in the practice of biobanks. In addition to offering a theoretical framework, the authors analyze numerous models for regulation, with examples mainly from the Central and Eastern European region. The overview of the functions of anonymity reveals also to what extent anonymity can be regarded as an efficient solution for the regulatory challenges. The authors sketch out the most influential regulatory positions and analyze them critically, using a multidisciplinary approach.

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Notes

  1. 1.

    Anonymity is derived from the Greek word άvωvuμία, anonymia, meaning “without a name” or “namelessness”. In colloquial use, anonymous typically refers to a person, and often means that the personal identity, or personal identifiable information of the given person is not known.

  2. 2.

    Ellis and Mannion, (2001, 1).

  3. 3.

    See the findings of the second international workshop within the Tiss.EU project organized by Judit Sándor and Petra Bárd from the Center for Ethics and Law in Biomedicine (CELAB) at the Central European University (CEU), Budapest, Hungary. About 30 persons, speakers included, participated at the workshop that took place at CEU on 6–8 April 2009. The workshop made a major contribution to one of the four Focal Themes of the Tiss.EU project by addressing questions of “Anonymisation and Pseudonymisation as Means of Privacy Protection” (Focal Theme C) in relatively unexplored jurisdictions of Central and Eastern Europe, such as the Czech Republic, Hungary, Slovakia, and Romania. Due to the interdisciplinary nature of the workshop’s subject, invited speakers represented a wide range of disciplines, such as law, medicine, philosophy, and information technology.

  4. 4.

    Laurie (2002, 295).

  5. 5.

    Lowrance (2002, 8).

  6. 6.

    See for example Article 321 of the Swiss Criminal Code.

  7. 7.

    See for example Article 33 of the Lithuanian Act on Data Protection on pecuniary and non-pecuniary damages.

  8. 8.

    Article 28 (2).

  9. 9.

    Article 29 Data Protection Working Party (2004, 19).

  10. 10.

    Article 28 (1).

  11. 11.

    Weir and Olick (2004, 294).

  12. 12.

    Recommendation Rec(2006)4 of the Committee of Ministers to member states on research on biological materials of human origin, Article 17.

  13. 13.

    The Genomics Law Report defines genetic exceptionalism in the following way: “Genetic exceptionalism is the concept that genetic information is inherently unique and should be treated differently in law than other forms of personal or medical information. There are several reasons for such special consideration: genetic information can predict disease occurrence in a person and their blood relatives; it uniquely identifies a person; and it can be used to discriminate and stigmatize individuals. While these issues deserve attention and steps should be taken to protect people, over-regulation could limit our ability to investigate how genetic information predicts disease and improve medical outcomes.” Available at http://www.genomicslawreport.com/index.php/2009/10/06/genetic-exceptionalism-and-the-precautionary-principle (accessed March 11, 2011).

  14. 14.

    Trouet and Sprumont (2002, 3–19).

  15. 15.

    Ibid. Other collaborators in the research were: Nikola Biller-Andorno, University of Zurich, Switzerland; Agomoni Ganguli-Mitra, University of Zurich, Switzerland; Andrea Boggio, Bryant University, USA; Alexander Mauron, University of Geneva, Switzerland; and Alexander M. Capron, University of Southern California, USA.

  16. 16.

    International Declaration on Human Genetic Data, 16 October 2003, Article 2, Points (ix) and (x).

  17. 17.

    Elger and Caplan (2006, 661–66).

  18. 18.

    UNESCO International Declaration on Human Genetic Data, 2003, Article 2, (x) and (xi).

  19. 19.

    See Article 3 on the identifiability of biological materials.

  20. 20.

    Article 29 Data Protection Working Party (2007a, 11).

  21. 21.

    Article 29 Data Protection Working Party (2004, 11–12).

  22. 22.

    Elger and Caplan, op. cit.

  23. 23.

    Article 29 Data Protection Working Party (2007b, 18).

  24. 24.

    Article 29 Data Protection Working Party (2007a, 11).

  25. 25.

    Ibid., 19–20.

  26. 26.

    See, for example, Claerhout and DeMoor (2005, 257–65); Székely (2009, 27–62).

  27. 27.

    Referred to by Zoltán Alexin at the second international workshop organised in Budapest within the Tiss.EU project. See also Xiao, Wang, and Gehrke (2009).

  28. 28.

    Data Protection Act 1998 (2002, 15).

  29. 29.

    See the findings of Ants Nõmper at the second international workshop organised in Budapest within the Tiss.EU project.

  30. 30.

    Human Genes Research Act (passed by the Riigikogu) (December 13, 2000, 104, 685).

  31. 31.

    Article 20 Section (1) HGRA.

  32. 32.

    Nõmper and Kruuv (2003, 213–24).

  33. 33.

    In Article 1 of the Act the purpose of the law is stated as “to lay down rules on human genetic tests and screening (studies) and human genetic research, the conditions and purposes of the treatment of genetic data and rules on biobanks.” The Act applies to genetic sampling for human genetic study and human genetic research performed under this Act in the territory of the Republic of Hungary, the processing of genetic data irrespective of the place of sampling, and to genetic testing and screening and human genetic research and to biobanks.

  34. 34.

    In order to understand the main focus of the debate, it should be mentioned that in the Hungarian law, the most considerable field within the right to privacy is the protection of personal data. The classical concepts of inviolability of domicile and secrecy of correspondence are also important subjects to be protected, but there is a much higher uncertainty in the abstract fields of privacy e.g. concerning the right to disposal of someone’s personal body.

  35. 35.

    Such as the right not to be discriminated against in the field of public health insurance and education.

  36. 36.

    See Article 3 Points (d), (e), and (f).

  37. 37.

    Article 23 (1).

  38. 38.

    Article 24.

  39. 39.

    Within the biobank, the person responsible for the protection of genetic samples and genetic data, the registering of genetic samples and data and the keeping of the register shall be the head of the institution maintaining the biobank and the person designated by the latter for the supervision of the operation of the biobank. Article 26 (1).

  40. 40.

    Article 25 (1).

  41. 41.

    Article 25 (2).

  42. 42.

    Chadwick (2001, 203–10, at 207).

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Author information

Authors and Affiliations

  1. Central European University, 1051, Budapest, Hungary

    Judit Sándor

  2. Center for Ethics and Law in Biomedicine, Budapest, Hungary

    Petra Bárd

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  1. Judit Sándor
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  2. Petra Bárd
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Correspondence to Judit Sándor .

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Editors and Affiliations

  1. Humboldtallee 36, Göttingen, 37073, Germany

    Christian Lenk

  2. Central European University, Nádor utca 9, Budapest, 1051, Hungary

    Judit Sándor

  3. Dublin City University, Residences Campus, Glasnevin, Dublin 9, Ireland

    Bert Gordijn

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Sándor, J., Bárd, P. (2011). Anonymity and Privacy in Biobanking. In: Lenk, C., Sándor, J., Gordijn, B. (eds) Biobanks and Tissue Research. The International Library of Ethics, Law and Technology, vol 8. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-1673-5_14

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  • DOI: https://doi.org/10.1007/978-94-007-1673-5_14

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  • Online ISBN: 978-94-007-1673-5

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