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  1. The Normative Power of Consent and Limits on Research Risks.Aaron Eli Segal & David S. Wendler - forthcoming - Ethical Theory and Moral Practice:1-16.
    Research regulations around the world do not impose any limits on the risks to which consenting adults may be exposed. Nonetheless, most review committees regard some risks as too high, even for consenting adults. To justify this practice, commentators have appealed to a range of considerations which are external to informed consent and the risks themselves. Most prominently, some argue that exposing consenting adults to very high risks has the potential to undermine public trust in research. This justification assumes that (...)
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  • Autonomy and Fear of Synthetic Biology: How Can Patients’ Autonomy Be Enhanced in the Field of Synthetic Biology? A Qualitative Study with Stable Patients.Milenko Rakic, Isabelle Wienand, David Shaw, Rebecca Nast & Bernice S. Elger - 2017 - Science and Engineering Ethics 23 (2):375-388.
    We analyzed stable patients’ views regarding synthetic biology in general, the medical application of synthetic biology, and their potential participation in trials of synthetic biology in particular. The aim of the study was to find out whether patients’ views and preferences change after receiving more detailed information about synthetic biology and its clinical applications. The qualitative study was carried out with a purposive sample of 36 stable patients, who suffered from diabetes or gout. Interviews were transcribed verbatim, translated and fully (...)
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  • What is in a Name? Parent, Professional and Policy-Maker Conceptions of Consent-Related Language in the Context of Newborn Screening.Stuart G. Nicholls, Holly Etchegary, Laure Tessier, Charlene Simmonds, Beth K. Potter, Jamie C. Brehaut, Daryl Pullman, Robin Z. Hayeems, Sari Zelenietz, Monica Lamoureux, Jennifer Milburn, Lesley Turner, Pranesh Chakraborty & Brenda J. Wilson - 2019 - Public Health Ethics 12 (2):158-175.
    Newborn bloodspot screening programs are some of the longest running population screening programs internationally. Debate continues regarding the need for parents to give consent to having their child screened. Little attention has been paid to how meanings of consent-related terminology vary among stakeholders and the implications of this for practice. We undertook semi-structured interviews with parents, healthcare professionals and policy decision makers in two Canadian provinces. Conceptions of consent-related terms revolved around seven factors within two broad domains, decision-making and information (...)
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  • Two Models of Informed Consent.Lynn A. Jansen - 2021 - Social Philosophy and Policy 38 (2):50-71.
    Informed consent is a central concept in the literature on the ethics of clinical care and human subjects research. There is a broad consensus that ethical practice in these domains requires the informed consent of patients and subjects. The requirements of informed consent in these domains, however, are matters of considerable controversy. Some argue that the requirements of informed consent have been inflated, others that they have not been taken seriously enough. This essay argues that both sides are partly right. (...)
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  • First-in-human HIV-remission studies: reducing and justifying risk.Rebecca Dresser - 2017 - Journal of Medical Ethics 43 (2):78-81.
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