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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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  • Ownership of individual-level health data, data sharing, and data governance.Jan Piasecki & Phaik Yeong Cheah - 2022 - BMC Medical Ethics 23 (1):1-9.
    Background The ownership status of individual-level health data affects the manner in which it is used. In this paper we analyze two competing models of the ownership status of the data discussed in the literature recently: private ownership and public ownership. Main body In this paper we describe the limitations of these two models of data ownership with respect to individual-level health data, in particular in terms of ethical principles of justice and autonomy, risk mitigation, as well as technological, economic, (...)
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  • Religious Perspectives on Precision Medicine in Singapore.Tamra Lysaght, Zhixia Tan, You Guang Shi, Swami Samachittananda, Sarabjeet Singh, Roland Chia, Raza Zaidi, Malminderjit Singh, Hung Yong Tay, Chitra Sankaran, Serene Ai Kiang Ong, Angela Ballantyne & Hui Jin Toh - 2021 - Asian Bioethics Review 13 (4):473-483.
    Precision medicine (PM) aims to revolutionise healthcare, but little is known about the role religion and spirituality might play in the ethical discourse about PM. This Perspective reports the outcomes of a knowledge exchange fora with religious authorities in Singapore about data sharing for PM. While the exchange did not identify any foundational religious objections to PM, ethical concerns were raised about the possibility for private industry to profiteer from social resources and the potential for genetic discrimination by private health (...)
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  • Artificial intelligence and medical research databases: ethical review by data access committees.Nina Hallowell, Darren Treanor, Daljeet Bansal, Graham Prestwich, Bethany J. Williams & Francis McKay - 2023 - BMC Medical Ethics 24 (1):1-7.
    BackgroundIt has been argued that ethics review committees—e.g., Research Ethics Committees, Institutional Review Boards, etc.— have weaknesses in reviewing big data and artificial intelligence research. For instance, they may, due to the novelty of the area, lack the relevant expertise for judging collective risks and benefits of such research, or they may exempt it from review in instances involving de-identified data.Main bodyFocusing on the example of medical research databases we highlight here ethical issues around de-identified data sharing which motivate the (...)
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  • The Ethical Data Practices Framework and Its Implications for Data Privacy Relations between the United States and the European Union.Vasiliki Rahimzadeh - 2023 - American Journal of Bioethics 23 (11):29-33.
    Private companies are data-rich. But market pressures to collect more, store more, and analyze more consumer data can often make them ethically bankrupt in the way of proactively protecting consume...
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  • Artificial Intelligence Needs Data: Challenges Accessing Italian Databases to Train AI.Ciara Staunton, Roberta Biasiotto, Katharina Tschigg & Deborah Mascalzoni - forthcoming - Asian Bioethics Review:1-13.
    Population biobanks are an increasingly important infrastructure to support research and will be a much-needed resource in the delivery of personalised medicine. Artificial intelligence (AI) systems can process and cross-link very large amounts of data quickly and be used not only for improving research power but also for helping with complex diagnosis and prediction of diseases based on health profiles. AI, therefore, potentially has a critical role to play in personalised medicine, and biobanks can provide a lot of the necessary (...)
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  • A qualitative interview study to determine barriers and facilitators of implementing automated decision support tools for genomic data access.Vasiliki Rahimzadeh, Jinyoung Baek, Jonathan Lawson & Edward S. Dove - 2024 - BMC Medical Ethics 25 (1):1-10.
    Data access committees (DAC) gatekeep access to secured genomic and related health datasets yet are challenged to keep pace with the rising volume and complexity of data generation. Automated decision support (ADS) systems have been shown to support consistency, compliance, and coordination of data access review decisions. However, we lack understanding of how DAC members perceive the value add of ADS, if any, on the quality and effectiveness of their reviews. In this qualitative study, we report findings from 13 semi-structured (...)
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  • Sharing precision medicine data with private industry: Outcomes of a citizens’ jury in Singapore.Angela Ballantyne, Tamra Lysaght, Hui Jin Toh, Serene Ong, Andrew Lau, G. Owen Schaefer, Vicki Xafis, E. Shyong Tai, Ainsley J. Newson, Stacy Carter, Chris Degeling & Annette Braunack-Mayer - 2022 - Big Data and Society 9 (1).
    Precision medicine is an emerging approach to treatment and disease prevention that relies on linkages between very large datasets of health information that is shared amongst researchers and health professionals. While studies suggest broad support for sharing precision medicine data with researchers at publicly funded institutions, there is reluctance to share health information with private industry for research and development. As the private sector is likely to play an important role in generating public benefits from precision medicine initiatives, it is (...)
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