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Genetic Classes and Genetic Categories: Protecting Genetic Groups Through Data Protection Law

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Group Privacy

Part of the book series: Philosophical Studies Series ((PSSP,volume 126))

Abstract

Each person shares genetic code with others. Thus, one individual’s genome can reveal information about other individuals. When multiple individuals share aspects of genetic architecture, they form a ‘genetic group’. From a social and legal perspective, two types of genetic group exist: Those which map to social groups – ‘genetic classes’ – and those which are perceived through interrogation of shared genetic code – ‘genetic categories’. Both of these groups may be seen to have legitimate interests affected when data about them are processed. This contribution considers if these interests can be effectively protected by the Data Protection Regulation. The contribution finds that the Regulation explicitly excludes genetic groups only in a relation to a limited number of provisions. Yet, the contribution also finds that the use of the Regulation to protect genetic groups would raise significant technical and substantial problems. In light of these problems, the contribution suggests a way forward based around guidance and ex ante oversight.

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Notes

  1. 1.

    http://www.geneticseducation.nhs.uk/genetic-conditions-54/710-tay-sachs-disease-new. (Last consulted 27.05.2015).

  2. 2.

    Further observations may be made from this genetic information. Tay-Sachs is particularly prevalent in the Ashkenazi Jewish population. If I know that John has the architecture related to Tay-Sachs, I might also assume that there is an above average chance that he is of Ashkenazi Jewish descent.

  3. 3.

    http://www.downs-syndrome.org.uk/. (Last consulted 27.05.2015).

  4. 4.

    For a full discussion of eugenics to the present day see: Bashford and Levine 2010.

  5. 5.

    We argue that, due to the uniquely individual nature of each genome, it is very difficult to claim any genetic data is anonymous.

  6. 6.

    A Regulation is a specific type of legal instrument which is directly applicable in all EU states. This instrument is to be opposed to a Directive. Directives require transposition into national law. In the case of the Data Protection Directive, the divergence in national transpositions caused significant legal fragmentation.

  7. 7.

    See for example the methodology outlined by the SAPIENT Project: Wright et al. 2014.

  8. 8.

    The Regulation recognises the necessity to take a broad approach to impacts, and to potentially affected parties, when conducting a DPIA. For example, Article 35(1) elaborates a DPIA is necessary when processing is ‘likely to result in a high risk to the rights and freedoms of natural persons’ – not just to data subjects.

  9. 9.

    The Regulation states that processing operations which result in the identification of a ‘high risk’ by a DPIA and whose risk has not subsequently been mitigated are also subject to the relevant Data Protection Authority’s (DPA) prior authorisation and consultation – Article 36. The purpose of the impact assessment procedure is thus partially to provide relevant information for the supervisory authority related to the risks implied in an act of processing. If genetic groups were to be recognised as important in the assessment phase, this would mean they would also be important for a DPA when conducting a prior check and granting authorisation.

  10. 10.

    These obligations are predominantly laid out in Article 5

  11. 11.

    These obligations are predominantly laid out in Chapter IV

  12. 12.

    For clarification of the concepts of ‘data subject’ and ‘personal data’, see: Article 29 Data Protection Working Party 2007. See also Article 4(1) of the Regulation

  13. 13.

    The Regulation outlines the power to monitor and enforce data protection and to investigate on a Data Protection Authority’s own volition, or on the basis of a complaint. See Article 58.

  14. 14.

    See Article 80 of the Regulation. In relation to ensuring that the provisions of the Regulation are followed and that the oversight and complaint function has an impact, Article 58 outlines broad sanctioning powers for the DPA. Article 83 then set out that breaches of the Regulation are associated with potentially heavy financially penalties which can be levied by Data Protection Authorities.

  15. 15.

    See Article 80

  16. 16.

    For a discussion of identifiability and how data must relate to a person, see: Article 29 Data Protection Working Party 2007.

  17. 17.

    See: https://ico.org.uk/for-organisations/guide-to-data-protection/principle-4-accuracy/. (Last consulted 27.05.2015).

  18. 18.

    See Article 68 of the Regulation.

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Authors and Affiliations

  1. FIZ Karlsruhe – Leibniz-Institut für Informationsinfrastruktur, Hermann-von-Helmholtz-Platz 1, 76344, Eggenstein-Leopoldshafen, Germany

    Dara Hallinan

  2. Vrije Universiteit Brussel, Brussels, Belgium

    Paul de Hert

Authors
  1. Dara Hallinan
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  2. Paul de Hert
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Correspondence to Dara Hallinan .

Editor information

Editors and Affiliations

  1. Tilburg Institute for Law, Technology and Society, Tilburg University, Tilburg, The Netherlands

    Linnet Taylor

  2. Oxford Internet Institute, University of Oxford, Oxford, United Kingdom

    Luciano Floridi

  3. Tilburg Institute for Law, Technology and Society, Tilburg University, Tilburg, The Netherlands

    Bart van der Sloot

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Hallinan, D., de Hert, P. (2017). Genetic Classes and Genetic Categories: Protecting Genetic Groups Through Data Protection Law. In: Taylor, L., Floridi, L., van der Sloot, B. (eds) Group Privacy. Philosophical Studies Series, vol 126. Springer, Cham. https://doi.org/10.1007/978-3-319-46608-8_10

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