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  1. 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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  • Genetic Data Aren't So Special: Causes and Implications of Reidentification.T. J. Kasperbauer & Peter H. Schwartz - 2020 - Hastings Center Report 50 (5):30-39.
    Genetic information is widely thought to pose unique risks of reidentifying individuals. Genetic data reveals a great deal about who we are and, the standard view holds, should consequently be treated differently from other types of data. Contrary to this view, we argue that the dangers of reidentification for genetic and nongenetic data—including health, financial, and consumer information—are more similar than has been recognized. Before different requirements are imposed around sharing genetic information, proponents of the standard view must show that (...)
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  • Better governance starts with better words: why responsible human tissue research demands a change of language.Annelien L. Bredenoord, Sarah N. Boers, Karin R. Jongsma & Michael A. Lensink - 2022 - BMC Medical Ethics 23 (1):1-10.
    The rise of precision medicine has led to an unprecedented focus on human biological material in biomedical research. In addition, rapid advances in stem cell technology, regenerative medicine and synthetic biology are leading to more complex human tissue structures and new applications with tremendous potential for medicine. While promising, these developments also raise several ethical and practical challenges which have been the subject of extensive academic debate. These debates have led to increasing calls for longitudinal governance arrangements between tissue providers (...)
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