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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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  • Where families and healthcare meet.M. A. Verkerk, Hilde Lindemann, Janice McLaughlin, Jackie Leach Scully, Ulrik Kihlbom, Jamie Nelson & Jacqueline Chin - 2015 - Journal of Medical Ethics 41 (2):183-185.
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  • Relationships and burden: An empirical‐ethical investigation of lived experience in home nursing arrangements.Anna‐Henrikje Seidlein, Ines Buchholz, Maresa Buchholz & Sabine Salloch - 2019 - Bioethics 33 (4):448-456.
    Quantitative research has called attention to the burden associated with informal caregiving in home nursing arrangements. Less emphasis has been placed, however, on care recipients’ subjective feelings of being a burden and on caregivers’ willingness to carry the burden in home care. This article uses empirical material from semi‐structured interviews conducted with older people affected by multiple chronic conditions and in need of long‐term home care, and with informal and professional caregivers, as two groups of relevant others. The high burden (...)
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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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