4 found
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  1.  26
    What is a Medical Information Commons?Juli M. Bollinger, Peter D. Zuk, Mary A. Majumder, Erika Versalovic, Angela G. Villanueva, Rebecca L. Hsu, Amy L. McGuire & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):41-50.
    A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.
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  2.  8
    Characterizing the Biomedical Data-Sharing Landscape.Angela G. Villanueva, Robert Cook-Deegan, Barbara A. Koenig, Patricia A. Deverka, Erika Versalovic, Amy L. McGuire & Mary A. Majumder - 2019 - Journal of Law, Medicine and Ethics 47 (1):21-30.
    Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.
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  3.  6
    Mapping the Dimensions of Agency.Andreas Schönau, Ishan Dasgupta, Timothy Brown, Erika Versalovic, Eran Klein & Sara Goering - forthcoming - American Journal of Bioethics Neuroscience:1-15.
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  4.  4
    “Who Will I Be?”: Relational Identity, Living with Amyotrophic Lateral Sclerosis, and Future-Oriented Decisionmaking.Erika Versalovic & Eran Klein - 2020 - Cambridge Quarterly of Healthcare Ethics 29 (4):617-629.
    Patients with amyotrophic lateral sclerosis face many difficult, timing-sensitive decisions over the course of their illness, weighing present versus future harms and benefits. Supplemented by interviews with people with ALS, we argue for a relational approach to understanding these decisions and their effects on identity. We highlight two critical aspects of the patient–caregiver relationship: the extent to which each may rely on the other leaves their wellbeing intimately intertwined and patients often require others to help with the imaginative task of (...)
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