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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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  • Informed Consent Should Be a Required Element for Newborn Screening, Even for Disorders with High Benefit-Risk Ratios.Norman Fost - 2016 - Journal of Law, Medicine and Ethics 44 (2):241-255.
    Over-enthusiastic newborn screening has often caused substantial harm and has been imposed on the public without adequate information on benefits and risks and without parental consent. This problem will become worse when genomic screening is implemented. For the past 40 years, there has been broad agreement about the criteria for ethically responsible screening, but the criteria have been systematically ignored by policy makers and practitioners. Claims of high benefit and low risk are common, but they require precise definition and documentation, (...)
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  • Introduction.Robert M. Sade - 2016 - Journal of Law, Medicine and Ethics 44 (2):228-230.
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