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  1. Neuroethics, confidentiality, and a cultural imperative in early onset Alzheimer disease: a case study with a First Nation population.Shaun Stevenson, B. L. Beattie, Richard Vedan, Emily Dwosh, Lindsey Bruce & Judy Illes - 2013 - Philosophy, Ethics, and Humanities in Medicine 8:15.
    The meaningful consideration of cultural practices, values and beliefs is a necessary component in the effective translation of advancements in neuroscience to clinical practice and public discourse. Society’s immense investment in biomedical science and technology, in conjunction with an increasingly diverse socio-cultural landscape, necessitates the study of how potential discoveries in neurodegenerative diseases such as Alzheimer disease are perceived and utilized across cultures. Building on the work of neuroscientists, ethicists and philosophers, we argue that the growing field of neuroethics provides (...)
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  • Exceptions to the rule of informed consent for research with an intervention.Susanne Rebers, Neil K. Aaronson, Flora E. van Leeuwen & Marjanka K. Schmidt - 2016 - BMC Medical Ethics 17 (1):1-11.
    BackgroundIn specific situations it may be necessary to make an exception to the general rule of informed consent for scientific research with an intervention. Earlier reviews only described subsets of arguments for exceptions to waive consent.MethodsHere, we provide a more extensive literature review of possible exceptions to the rule of informed consent and the accompanying arguments based on literature from 1997 onwards, using both Pubmed and PsycINFO in our search strategy.ResultsWe identified three main categories of arguments for the acceptability of (...)
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  • Ethical Issues in the Use of Nudges to Obtain Informed Consent for Biomedical Research.Maxwell J. Mehlman, Eric Kodish & Jessica Berg - 2018 - IRB: Ethics & Human Research 40 (3):1-5.
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  • Duties When an Anonymous Student Health Survey Finds a Hot Spot of Suicidality.Arnold H. Levinson, M. Franci Crepeau-Hobson, Marilyn E. Coors, Jacqueline J. Glover, Daniel S. Goldberg & Matthew K. Wynia - 2020 - American Journal of Bioethics 20 (10):50-60.
    Public health agencies regularly survey randomly selected anonymous students to track drug use, sexual activities, and other risk behaviors. Students are unidentifiable, but a recent project that i...
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  • Comments Confirm That Student Health Surveillance Needs Ethics Guidelines to Act on Risk-Cluster Findings.Arnold H. Levinson, M. Franci Crepeau-Hobson, Jacqueline Glover, Marilyn E. Coors, Daniel S. Goldberg & Matthew K. Wynia - 2020 - American Journal of Bioethics 20 (10):W4-W7.
    Volume 20, Issue 10, October 2020, Page W4-W7.
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  • Rethinking Informed Consent in Biobanking and Biomedical Research: a Taiwanese Aboriginal Perspective and the Implenentation of Group Consultation.Chih-Hsing Ho - 2017 - Asian Bioethics Review 9 (4):353-365.
    The current informed consent mechanism is based mainly on the rationale of individualism, particularly for its emphasis on autonomy and self-determination. However, in biobanking and genetic research, research findings may pose a risk of harm to the collective, quite aside from a particular individual. Under this circumstance, individual consent needs to be supplemented by other mechanisms, such as group consent obtained from the relevant group or community. In Taiwan, the inclusion of Taiwanese aborigines in biobanking and genetic research challenges the (...)
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  • Response to Open Peer Commentaries on “Accidental Communities: Race, Emergency Medicine, and the Problem of PolyHeme”: The “R” Word: Bioethics and a (Dis)Regard of Race.Karla F. C. Holloway - 2006 - American Journal of Bioethics 6 (3):W46-W48.
    This article focuses on emergency medical care in black urban populations, suggesting that the classification of a “community” within clinical trial language is problematic. The article references a cultural history of black Americans with pre-hospital emergency medical treatment as relevant to contemporary emergency medicine paradigms. Part I explores a relationship between “autonomy” and “community.” The idea of community emerges as a displacement for the ethical principle of autonomy precisely at the moment that institutionalized medicine focuses on diversity. Part II examines (...)
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  • Consideration and Disclosure of Group Risks in Genomics and Other Data-Centric Research: Does the Common Rule Need Revision?Carolyn Riley Chapman, Gwendolyn P. Quinn, Heini M. Natri, Courtney Berrios, Patrick Dwyer, Kellie Owens, Síofra Heraty & Arthur L. Caplan - forthcoming - American Journal of Bioethics:1-14.
    Harms and risks to groups and third-parties can be significant in the context of research, particularly in data-centric studies involving genomic, artificial intelligence, and/or machine learning technologies. This article explores whether and how United States federal regulations should be adapted to better align with current ethical thinking and protect group interests. Three aspects of the Common Rule deserve attention and reconsideration with respect to group interests: institutional review board (IRB) assessment of the risks/benefits of research; disclosure requirements in the informed (...)
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