The Effect of Proprietary and Attribution Claims on Data Sharing During Infectious Disease Emergencies
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Rourke, Michelle
Katz, Rebecca
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Abstract
Responding to infectious disease emergencies is critically dependent upon the collection, analysis, and sharing of relevant data.1 These data include clinical, epidemiological, laboratory, surveillance, emergency response, geospatial, health facility data, knowledge, attitude and practices surveys, and pathogen genetic sequences.2 In contexts where the pathogen is unknown, or where there is no licensed biomedical intervention, relevant data also includes results from research into diagnostics, therapeutics, and vaccines.3 Recent infectious disease emergencies, including and perhaps especially the COVID-19 pandemic, have demonstrated that commercial and scientific proprietary claims have impeded critical data sharing.4 These claims are based on an incoherent patchwork of legal and ethical guidelines that often deteriorate in the face of infectious disease emergencies, creating major barriers to data sharing.5 These problems are exacerbated by some of the current incentives put in place by governments, funders, and medical journals.6 As we are witnessing today, climate change, urbanization and conflict are factors contributing to the emergence of novel pathogens that are likely to threaten human health security, it is crucial to identify the legal, social, and ethical barriers to data sharing and construct solutions to them now, before responders are in the midst of an infectious disease emergency.7
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Journal of Health Care Law and Policy
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23
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2
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© The Author(s) 2021. The attached file is reproduced here in accordance with the copyright policy of the publisher. Please refer to the journal's website for access to the definitive, published version.
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Law
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Halabi, S; Rourke, M; Katz, R, The Effect of Proprietary and Attribution Claims on Data Sharing During Infectious Disease Emergencies, Journal of Health Care Law and Policy, 2021, 23 (2), pp. 203-226