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  1. “I would rather have it done by a doctor”—laypeople’s perceptions of direct-to-consumer genetic testing (DTC GT) and its ethical implications.Manuel Schaper, Sabine Wöhlke & Silke Schicktanz - 2019 - Medicine, Health Care and Philosophy 22 (1):31-40.
    Direct-to-consumer genetic testing has been available for several years now, with varying degrees of regulation across different countries. Despite a restrictive legal framework it is possible for consumers to order genetic tests from companies located in other countries. However, German laypeople’s awareness and perceptions of DTC GT services is still unexplored. We conducted seven focus groups with German laypeople to explore their perceptions of and attitudes towards commercial genetic testing and its ethical implications. Participants were critical towards DTC GT. Criticism (...)
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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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  • On the personal utility of Alzheimer’s disease-related biomarker testing in the research context.Eline M. Bunnik, Edo Richard, Richard Milne & Maartje H. N. Schermer - 2018 - Journal of Medical Ethics 44 (12):830-834.
    Many healthy volunteers choose to take part in Alzheimer’s disease prevention studies because they want to know whether they will develop dementia—and what they can do to reduce their risk—and are therefore interested in learning the results of AD biomarker tests. Proponents of AD biomarker disclosure often refer to the personal utility of AD biomarkers, claiming that research participants will be able to use AD biomarker information for personal purposes, such as planning ahead or making important life decisions. In this (...)
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  • Direct to consumer genetic testing and the libertarian right to test.Wendy Elizabeth Bonython & Bruce Baer Arnold - 2018 - Journal of Medical Ethics 44 (11):787-789.
    Loi recently proposed a libertarian right to direct to consumer genetic testing — independent of autonomy or utility—reflecting Cohen’s work on self-ownership and Hohfeld’s model of jural relations. Cohen’s model of libertarianism dealt principally with self-ownership of the physical body. Although Loi adequately accounts for the physical properties of DNA, DNA is also an informational substrate, highly conserved within families. Information about the genome of relatives of the person undergoing testing may be extrapolated without requiring direct engagement with their personal (...)
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  • Moral motivation regarding dementia risk testing among affected persons in Germany and Israel.Zümrüt Alpinar-Sencan, Silke Schicktanz, Natalie Ulitsa, Daphna Shefet & Perla Werner - 2021 - Journal of Medical Ethics 48 (11):861-867.
    Recent advances in biomarkers may soon make it possible to identify persons at high risk for late-onset Alzheimer’s disease at a presymptomatic stage. Popular demand for testing is increasing despite the lack of cure and effective prevention options and despite uncertainties regarding the predictive value of biomarker tests. This underscores the relevance of the ethical, cultural and social implications of predictive testing and the need to advance the bioethical debate beyond considerations of clinical consequences. Our qualitative study included three groups (...)
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