4 found
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  1.  81
    Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research.Stephanie A. Kraft, Mildred K. Cho, Katherine Gillespie, Meghan Halley, Nina Varsava, Kelly E. Ormond, Harold S. Luft, Benjamin S. Wilfond & Sandra Soo-Jin Lee - 2018 - American Journal of Bioethics 18 (4):3-20.
    With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on (...)
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  2.  4
    How Do Molecular Systems Engineering Scientists Frame the Ethics of Their Research?Renan Gonçalves Leonel da Silva, Alessandro Blasimme, Effy Vayena & Kelly E. Ormond - forthcoming - AJOB Empirical Bioethics.
    Background There are intense discussions about the ethical and societal implications of biomedical engineering, but little data to suggest how scientists think about the ethics of their work. The aim of this study is to describe how scientists frame the ethics of their research, with a focus on the field of molecular systems engineering.Methods Semi-structured qualitative interviews were conducted during 2021–2022, as part of a larger study. This analysis includes a broad question about how participants view ethics as related to (...)
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    Translational Justice in Human Gene Editing: Bringing End User Engagement and Policy Together.Megan A. Allyse, Karen M. Meagher, Marsha Michie, Rosario Isasi, Kelly E. Ormond, Natasha Bonhomme, Yvonne Bombard, Heidi Howard, Kiran Musunuru, Kirsten A. Riggan & Sabina Rubeck - 2023 - American Journal of Bioethics 23 (7):55-58.
    In their target article, Conley et al. (2023) appropriately highlight the ongoing conceptual and practical opacity of public engagement (PE) in the translation of human gene editing (HGE) (Conley e...
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    Expanding Our Thoughts about Autonomy in Relation to Whether We Should Offer Genetic Testing for Nonmedical Traits.Kelly E. Ormond - 2023 - American Journal of Bioethics 23 (3):21-23.
    The Target Article “Non-invasive prenatal testing for ‘non-medical’ traits: ensuring consistency in ethical decision making” by Bowman-Smart et al. (2023) raises the important issue that “decision-...
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