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  1. Researcher and study participants’ perspectives of consent in clinical studies in four referral hospitals in Vietnam.Jennifer Ilo Van Nuil, Thi Thanh Thuy Nguyen, Thanh Nhan Le Nguyen, Van Vinh Chau Nguyen, Mary Chambers, Thi Dieu Ngan Ta, Laura Merson, Thi Phuong Dung Nguyen, Minh Tu Van Hoang, Michael Parker, Susan Bull & Evelyne Kestelyn - 2020 - BMC Medical Ethics 21 (1):1-12.
    Within the research community, it is generally accepted that consent processes for research should be culturally appropriate and tailored to the context, yet researchers continue to grapple with what valid consent means within specific stakeholder groups. In this study, we explored the consent practices and attitudes regarding essential information required for the consent process within hospital-based trial communities from four referral hospitals in Vietnam. We collected surveys from and conducted semi-structured interviews with study physicians, study nurses, ethics committee members, and (...)
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  • Informed Consent and Community Engagement in Open Field Research: Lessons for Gene Drive Science.Jerome Amir Singh - 2019 - BMC Medical Ethics 20 (1):54.
    The development of the CRISPR/Cas9 gene editing system has generated new possibilities for the use of gene drive constructs to reduce or suppress mosquito populations to levels that do not support disease transmission. Despite this prospect, social resistance to genetically modified organisms remains high. Gene drive open field research thus raises important questions regarding what is owed to those who may not consent to such research, or those could be affected by the proposed research, but whose consent is not solicited. (...)
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  • Enhance Diversity Among Researchers to Promote Participant Trust in Precision Medicine Research.Demetrio Sierra-Mercado & Gabriel Lázaro-Muñoz - 2018 - American Journal of Bioethics 18 (4):44-46.
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  • Ensuring Respect for Persons in COMPASS: A Cluster Randomised Pragmatic Clinical Trial.Joseph E. Andrews, J. Brian Moore, Richard B. Weinberg, Mysha Sissine, Sabina Gesell, Jacquie Halladay, Wayne Rosamond, Cheryl Bushnell, Sara Jones, Paula Means, Nancy M. P. King, Diana Omoyeni & Pamela W. Duncan - 2018 - Journal of Medical Ethics 44 (8):560-566.
    Cluster randomised clinical trials present unique challenges in meeting ethical obligations to those who are treated at a randomised site. Obtaining informed consent for research within the context of clinical care is one such challenge. In order to solve this problem it is important that an informed consent process be effective and efficient, and that it does not impede the research or the healthcare. The innovative approach to informed consent employed in the COMPASS study demonstrates the feasibility of upholding ethical (...)
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  • Patients' Trust as Fundament for Research Ethics Boards.Krista Tromp & Suzanne van de Vathorst - 2018 - American Journal of Bioethics 18 (4):42-44.
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  • 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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