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  1. Public attitudes towards genomic data sharing: results from a provincial online survey in Canada.Proton Rahman, Daryl Pullman, Charlene Simmonds, Georgia Darmonkov & Holly Etchegary - 2023 - BMC Medical Ethics 24 (1):1-10.
    BackgroundWhile genomic data sharing can facilitate important health research and discovery benefits, these must be balanced against potential privacy risks and harms to individuals. Understanding public attitudes and perspectives on data sharing is important given these potential risks and to inform genomic research and policy that aligns with public preferences and needs.MethodsA cross sectional online survey measured attitudes towards genomic data sharing among members of the general public in an Eastern Canadian province.ResultsResults showed a moderate comfort level with sharing genomic (...)
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  • Exploring how biobanks communicate the possibility of commercial access and its associated benefits and risks in participant documents.A. Lucassen, R. Broekstra, F. Hardcastle & G. Samuel - 2022 - BMC Medical Ethics 23 (1):1-14.
    BackgroundBiobanks and biomedical research data repositories collect their samples and associated data from volunteer participants. Their aims are to facilitate biomedical research and improve health, and they are framed in terms of contributing to the public good. Biobank resources may be accessible to researchers with commercial motivations, for example, researchers in pharmaceutical companies who may utilise the data to develop new clinical therapeutics and pharmaceutical drugs. Studies exploring citizen perceptions of public/private interactions associated with large health data repositories/biobanks indicate that (...)
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