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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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  • Blanket Consent and Trust in the Biobanking Context.Morten Ebbe Juul Nielsen & Nana Cecilie Halmsted Kongsholm - 2022 - Journal of Bioethical Inquiry 19 (4):1-11.
    Obtaining human genetic samples is vital for many biobank research purposes, yet, the ethics of obtainment seems to many fraught with difficulties. One key issue is consent: it is by many considered ethically vital that consent must be fully informed (at least ideally speaking) in order to be legitimate. In this paper, we argue for a more liberal approach to consent: a donor need not know all the specifics of future uses of the sample. We argue that blanket consent is (...)
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  • Recent insights into decision-making and their implications for informed consent.Irene M. L. Vos, Maartje H. N. Schermer & Ineke L. L. E. Bolt - 2018 - Journal of Medical Ethics 44 (11):734-738.
    Research from behavioural sciences shows that people reach decisions in a much less rational and well-considered way than was often assumed. The doctrine of informed consent, which is an important ethical principle and legal requirement in medical practice, is being challenged by these insights into decision-making and real-world choice behaviour. This article discusses the implications of recent insights of research on decision-making behaviour for the informed consent doctrine. It concludes that there is a significant tension between the often non-rational choice (...)
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  • Being Polite: Why Biobank Consent Comprehension Is Neither a Requirement nor an Aspiration.Berge Solberg & Lars Ursin - 2019 - American Journal of Bioethics 19 (5):31-33.
    Volume 19, Issue 5, May 2019, Page 31-33.
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  • Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences.Kajsa Norbäck, Anna T. Höglund, Tove Godskesen & Sara Frygner-Holm - 2023 - BMC Medical Ethics 24 (1):1-13.
    Background Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research. Methods An explorative qualitative (...)
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  • Measuring Understanding and Respecting Trust in Biobank Consent.T. J. Kasperbauer & Peter H. Schwartz - 2019 - American Journal of Bioethics 19 (5):29-31.
    Volume 19, Issue 5, May 2019, Page 29-31.
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  • Exploring the Decision-Making Process of People Living with HIV Enrolled in Antiretroviral Clinical Trials: A Qualitative Study of Decisions Guided by Trust and Emotions.Maria Feijoo-Cid, Antonia Arreciado Marañón, Ariadna Huertas, Amado Rivero-Santana, Carina Cesar, Valeria Fink, María Isabel Fernández-Cano & Omar Sued - 2023 - Health Care Analysis 31 (3):135-155.
    The informed consent is an ethical and legal requirement for potential participants to enroll in a study. There is ample of evidence that understanding consent information and enrollment is challenging for participants in clinical trials. On the other hand, the reasoning process behind decision-making in HIV clinical trials remains mostly unexplored. This study aims to examine the decision-making process of people living with HIV currently participating in antiretroviral clinical trials and their understanding of informed consent. We conducted a qualitative socio-constructivist (...)
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