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Genetic Data and the Law
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  • Cited by 14
  • Cited by
    This book has been cited by the following publications. This list is generated based on data provided by CrossRef.

    Prainsack, Barbara 2018. The “We” in the “Me”. Science, Technology, & Human Values, Vol. 43, Issue. 1, p. 21.

    Taylor, M. J. Wallace, S. E. and Prictor, M. 2018. United Kingdom: transfers of genomic data to third countries. Human Genetics, Vol. 137, Issue. 8, p. 637.

    2018. Personalised Medicine, Individual Choice and the Common Good. p. 306.

    Hallinan, Dara and de Hert, Paul 2017. Group Privacy. p. 175.

    Krajewska, Atina 2017. eLS. p. 1.

    Stevens, Leslie Dobbs, Christine Jones, Kerina and Laurie, Graeme 2017. Data Protection and Privacy: (In)visibilities and Infrastructures. Vol. 36, Issue. , p. 205.

    Mills, Peter 2016. The Ethics of Biomedical Big Data. Vol. 29, Issue. , p. 429.

    Postan, Emily 2016. Defining Ourselves: Personal Bioinformation as a Tool of Narrative Self-Conception. Journal of Bioethical Inquiry, Vol. 13, Issue. 1, p. 133.

    Hallinan, Dara and De Hert, Paul 2016. The Ethics of Biomedical Big Data. Vol. 29, Issue. , p. 119.

    Hallinan, Dara and Friedewald, Michael 2015. Open consent, biobanking and data protection law: can open consent be ‘informed’ under the forthcoming data protection regulation?. Life Sciences, Society and Policy, Vol. 11, Issue. 1,

    Fernandes, Márcia Santana Ashton-Prolla, Patrícia de Moraes, Leonardo Stoll Matte, Úrsula Silveira Goldim, José Roberto and Martins-Costa, Judith 2015. Genetic information and biobanking: a Brazilian perspective on biological and biographical issues. Journal of Community Genetics, Vol. 6, Issue. 3, p. 295.

    Phillips, Mark Knoppers, Bartha M. and Joly, Yann 2015. Seeking a "Race to the Top" in Genomic Cloud Privacy?. p. 65.

    Miller, Jane Soulier, Alexandra Bertier, Gabrielle and Cambon-Thomsen, Anne 2014. Professionals’ Attitudes Regarding Large-Scale Genetic Information Generated Through Next Generation Sequencing in Research. Journal of Empirical Research on Human Research Ethics, Vol. 9, Issue. 3, p. 56.

    Bonython, Wendy and Arnold, Bruce 2014. Disclosure ‘downunder’: misadventures in Australian genetic privacy law. Journal of Medical Ethics, Vol. 40, Issue. 3, p. 168.


Book description

Research using genetic data raises various concerns relating to privacy protection. Many of these concerns can also apply to research that uses other personal data, but not with the same implications for failure. The norms of exclusivity associated with a private life go beyond the current legal concept of personal data to include genetic data that relates to multiple identifiable individuals simultaneously and anonymous data that could be associated with any number of individuals in different, but reasonably foreseeable, contexts. It is the possibilities and implications of association that are significant, and these possibilities can only be assessed if one considers the interpretive potential of data. They are missed if one fixates upon its interpretive pedigree or misunderstands the meaning and significance of identification. This book demonstrates how the public interest in research using genetic data might be reconciled with the public interest in proper privacy protection.

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