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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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  • Ethical considerations for HIV cure-related research at the end of life.Karine Dubé, Sara Gianella, Susan Concha-Garcia, Susan J. Little, Andy Kaytes, Jeff Taylor, Kushagra Mathur, Sogol Javadi, Anshula Nathan, Hursch Patel, Stuart Luter, Sean Philpott-Jones, Brandon Brown & Davey Smith - 2018 - BMC Medical Ethics 19 (1):83.
    The U.S. National Institute of Allergies and Infectious Diseases and the National Institute of Mental Health have a new research priority: inclusion of terminally ill persons living with HIV in HIV cure-related research. For example, the Last Gift is a clinical research study at the University of California San Diego for PLWHIV who have a terminal illness, with a prognosis of less than 6 months. As end-of-life HIV cure research is relatively new, the scientific community has a timely opportunity to (...)
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  • Still Human: A Call for Increased Focus on Ethical Standards in Cadaver Research.Michelle C. Bach - 2016 - HEC Forum 28 (4):355-367.
    Research on human cadavers is an important mechanism of scientific progress and comprises a large industry in the United States. However, despite its importance and influence, there is little ethical or regulatory oversight of cadaver-based research. This lack of transparency raises important ethical questions. Thus, this paper serves as a call for ethicists and regulators to pay increased attention to cadaver research. I argue that cadaver research ought to be considered a subset of human subjects research and held accountable to (...)
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