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    Sharing health-related data: a privacy test?


    Dyke, Stephanie OM, Dove, Edward and Knoppers, Bartha M (2016) Sharing health-related data: a privacy test? npj Genomic Medicine, 1 (16024). pp. 1-6. ISSN 2056-7944

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    Abstract

    Greater sharing of potentially sensitive data raises important ethical, legal and social issues (ELSI), which risk hindering and even preventing useful data sharing if not properly addressed. One such important issue is respecting the privacy-related interests of individuals whose data are used in genomic research and clinical care. As part of the Global Alliance for Genomics and Health (GA4GH), we examined the ELSI status of health-related data that are typically considered ‘sensitive’ in international policy and data protection laws. We propose that ‘tiered protection’ of such data could be implemented in contexts such as that of the GA4GH Beacon Project to facilitate responsible data sharing. To this end, we discuss a Data Sharing Privacy Test developed to distinguish degrees of sensitivity within categories of data recognised as ‘sensitive’. Based on this, we propose guidance for determining the level of protection when sharing genomic and health-related data for the Beacon Project and in other international data sharing initiatives.
    Item Type: Article
    Keywords: Sharing; health-related data; privacy test;
    Academic Unit: Assisting Living & Learning,ALL institute
    Faculty of Social Sciences > Law
    Item ID: 19940
    Identification Number: 10.1038/npjgenmed.2016.24
    Depositing User: Edward Dove
    Date Deposited: 03 Jun 2025 16:10
    Journal or Publication Title: npj Genomic Medicine
    Publisher: Nature Research
    Refereed: Yes
    Related URLs:
    URI: https://mural.maynoothuniversity.ie/id/eprint/19940
    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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