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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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  • Genes wide open: Data sharing and the social gradient of genomic privacy.Tobias Haeusermann, Marta Fadda, Alessandro Blasimme, Bastian Greshake Tzovaras & Effy Vayena - forthcoming - AJOB Empirical Bioethics:1-15.
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  • Personalized medicine, digital technology and trust: a Kantian account.Bjørn K. Myskja & Kristin S. Steinsbekk - 2020 - Medicine, Health Care and Philosophy 23 (4):577-587.
    Trust relations in the health services have changed from asymmetrical paternalism to symmetrical autonomy-based participation, according to a common account. The promises of personalized medicine emphasizing empowerment of the individual through active participation in managing her health, disease and well-being, is characteristic of symmetrical trust. In the influential Kantian account of autonomy, active participation in management of own health is not only an opportunity, but an obligation. Personalized medicine is made possible by the digitalization of medicine with an ensuing increased (...)
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  • The epistemic harms of direct-to-consumer genetic tests.Yasmin Haddad - 2023 - Medicine, Health Care and Philosophy 26 (4):559-571.
    In this paper, I provide an epistemic evaluation of the harms that result from the widespread marketing of direct-to-consumer (DTC) genetic tests. While genetic tests are a valuable accessory diagnostic tool when ordered by a medical practitioner, there are different implications when they are sold directly to consumers. I aim to show that there are both epistemic and non-epistemic harms associated with the widespread commoditization of DTC genetic tests. I argue that the epistemic harms produced by DTC genetic tests have (...)
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