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  1. 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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  • 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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