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    A human rights approach to an international code of conduct for genomic and clinical data sharing


    Knoppers, Bartha M., Harris, Jennifer R., Budin-Ljøsne, Isabelle and Dove, Edward (2014) A human rights approach to an international code of conduct for genomic and clinical data sharing. Human Genetics, 133 (7). pp. 895-903. ISSN 0340-6717

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    Abstract

    Fostering data sharing is a scientific and ethical imperative. Health gains can be achieved more comprehensively and quickly by combining large, information-rich datasets from across conventionally siloed disciplines and geographic areas. While collaboration for data sharing is increasingly embraced by policymakers and the international biomedical community, we lack a common ethical and legal framework to connect regulators, funders, consortia, and research projects so as to facilitate genomic and clinical data linkage, global science collaboration, and responsible research conduct. Governance tools can be used to responsibly steer the sharing of data for proper stewardship of research discovery, genomics research resources, and their clinical applications. In this article, we propose that an international code of conduct be designed to enable global genomic and clinical data sharing for biomedical research. To give this proposed code universal application and accountability, however, we propose to position it within a human rights framework. This proposition is not without precedent: international treaties have long recognized that everyone has a right to the benefits of scientific progress and its applications, and a right to the protection of the moral and material interests resulting from scientific productions. It is time to apply these twin rights to internationally collaborative genomic and clinical data sharing.
    Item Type: Article
    Keywords: human rights; international; code of conduct; genomic; clinical data sharing;
    Academic Unit: Assisting Living & Learning,ALL institute
    Faculty of Social Sciences > Law
    Item ID: 19967
    Identification Number: 10.1007/s00439-014-1432-6
    Depositing User: Edward Dove
    Date Deposited: 09 Jun 2025 14:18
    Journal or Publication Title: Human Genetics
    Publisher: Springer
    Refereed: Yes
    Related URLs:
    URI: https://mural.maynoothuniversity.ie/id/eprint/19967
    Use Licence: This item is available under a Creative Commons Attribution Non Commercial Share Alike Licence (CC BY-NC-SA). Details of this licence are available here

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