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  1. Family experiences with non-therapeutic research on dying patients in the intensive care unit.Amanda van Beinum, Nick Murphy, Charles Weijer, Vanessa Gruben, Aimee Sarti, Laura Hornby, Sonny Dhanani & Jennifer Chandler - 2022 - Journal of Medical Ethics 48 (11):845-851.
    Experiences of substitute decision-makers with requests for consent to non-therapeutic research participation during the dying process, including to what degree such requests are perceived as burdensome, have not been well described. In this study, we explored the lived experiences of family members who consented to non-therapeutic research participation on behalf of an imminently dying patient. We interviewed 33 family members involved in surrogate research consent decisions for dying patients in intensive care. Non-therapeutic research involved continuous physiological monitoring of dying patients (...)
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  • The ethics of testing and research of manufactured organs on brain-dead/recently deceased subjects.Brendan Parent, Bruce Gelb, Stephen Latham, Ariane Lewis, Laura L. Kimberly & Arthur L. Caplan - 2020 - Journal of Medical Ethics 46 (3):199-204.
    Over 115 000 people are waiting for life-saving organ transplants, of whom a small fraction will receive transplants and many others will die while waiting. Existing efforts to expand the number of available organs, including increasing the number of registered donors and procuring organs in uncontrolled environments, are crucial but unlikely to address the shortage in the near future and will not improve donor/recipient compatibility or organ quality. If successful, organ bioengineering can solve the shortage and improve functional outcomes. Studying (...)
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  • Enrolling Brain-Dead Humans in Medical Research: Stakeholder Opinions.Marilyn C. Morris, Tanya Sachdeva & George E. Hardart - 2014 - AJOB Empirical Bioethics 5 (4):22-29.
    Background: Brain-dead humans retain many of the physiologic functions of living humans, but they are legally dead and cannot be physically harmed by participation in research. Stakeholder opinions...
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  • Social Contexts Influence Ethical Considerations of Research.Robert J. Levine, Carolyn M. Mazure, Philip E. Rubin, Barry R. Schaller, John L. Young & Judith B. Gordon - 2011 - American Journal of Bioethics 11 (5):24-30.
    This article argues that we could improve the design of research protocols by developing an awareness of and a responsiveness to the social contexts of all the actors in the research enterprise, including subjects, investigators, sponsors, and members of the community in which the research will be conducted. ?Social context? refers to the settings in which the actors are situated, including, but not limited to, their social, economic, political, cultural, and technological features. The utility of thinking about social contexts is (...)
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  • Response to Open Peer Commentaries on “Social Contexts Influence Ethical Considerations of Research”.Robert J. Levine, Judith B. Gordon, Carolyn M. Mazure, Philip E. Rubin, Barry R. Schaller & John L. Young - 2011 - American Journal of Bioethics 11 (5):W1-W2.
    This article argues that we could improve the design of research protocols by developing an awareness of and a responsiveness to the social contexts of all the actors in the research enterprise, including subjects, investigators, sponsors, and members of the community in which the research will be conducted. “Social context” refers to the settings in which the actors are situated, including, but not limited to, their social, economic, political, cultural, and technological features. The utility of thinking about social contexts is (...)
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  • Quality-of-life considerations in substitute decision-making for severely disabled neonates: The problem of developing awareness.Eike-Henner W. Kluge - 2009 - Theoretical Medicine and Bioethics 30 (5):351-366.
    Substitute decision-makers for severely disabled neonates who can be kept alive but who will require constant medical interventions and will die at the latest in their teens are faced with a difficult decision when trying to decide whether to keep the infant alive. By and large, the primary focus of their decision-making centers on what is in the best interests of the newborn. The best-interests criterion, in turn, is importantly conditioned by quality-of-life considerations. However, the concept of quality of life (...)
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