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  1. Patient and Family Descriptions of Ethical Concerns.Hae Lin Cho, Christine Grady, Anita Tarzian, Gail Povar, Jed Mangal & Marion Danis - 2020 - American Journal of Bioethics 20 (6):52-64.
    Ethically challenging situations routinely arise in the course of illness and healthcare. However, very few studies have surveyed patients and family members about their experiences with ethically challenging situations. To address this gap in the literature, we surveyed patients and family members at three hospitals. We conducted a content analysis of their responses to open-ended questions about their most memorable experience with an ethical concern for them or their family member. Participants described 219 unique ethical experiences that spanned many of (...)
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  • Model consent clauses for rare disease research.Minh Thu Nguyen, Jack Goldblatt, Rosario Isasi, Marlene Jagut, Anneliene Hechtelt Jonker, Petra Kaufmann, Laetitia Ouillade, Fruszina Molnar-Gabor, Mahsa Shabani, Eric Sid, Anne Marie Tassé, Durhane Wong-Rieger & Bartha Maria Knoppers - 2019 - BMC Medical Ethics 20 (1):1-7.
    Rare Disease research has seen tremendous advancements over the last decades, with the development of new technologies, various global collaborative efforts and improved data sharing. To maximize the impact of and to further build on these developments, there is a need for model consent clauses for rare diseases research, in order to improve data interoperability, to meet the informational needs of participants, and to ensure proper ethical and legal use of data sources and participants’ overall protection. A global Task Force (...)
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  • Familial genetic risks: how can we better navigate patient confidentiality and appropriate risk disclosure to relatives?Edward S. Dove, Vicky Chico, Michael Fay, Graeme Laurie, Anneke M. Lucassen & Emily Postan - 2019 - Journal of Medical Ethics 45 (8):504-507.
    This article investigates a high-profile and ongoing dilemma for healthcare professionals, namely whether the existence of a duty of care to genetic relatives of a patient is a help or a hindrance in deciding what to do in cases where a patient’s genetic information may have relevance to the health of the patient’s family members. The English case ABC v St George’s Healthcare NHS Trust and others considered if a duty of confidentiality owed to the patient and a putative duty (...)
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