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  1. The Sad Story of Newborn Screening for Krabbe: The Need for Good Governance.Fiona Alice Miller - 2013 - Public Health Ethics 6 (1):123-126.
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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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  • Screening of Newborns for Disorders with High Benefit-Risk Ratios Should Be Mandatory.Nicole Kelly, Dalia Chehayeb Makarem & Melissa P. Wasserstein - 2016 - Journal of Law, Medicine and Ethics 44 (2):231-240.
    Newborn screening has evolved to include an increasingly complex spectrum of diseases, raising concerns that screening should be optional and require parental consent. Early detection of disorders like PKU and MCAD is essential to prevent serious disability and death in affected children. These are examples of high benefit-risk ratio disorders because of the irrefutable health benefits of early detection, coupled with the low risks of treatment. The dire consequences of not diagnosing an infant with a treatable disorder because of parental (...)
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  • The Ethics of Krabbe Newborn Screening.R. H. Dees & J. M. Kwon - 2013 - Public Health Ethics 6 (1):114-128.
    The experience of newborn screening for Krabbe disease in New York State demonstrates the ethical problems that arise when screening programs are expanded in the absence of true understanding of the diseases involved. In its 5 years of testing and millions of dollars in costs, there have been very few benefits, and the testing has uncovered potential cases of late-onset disease that raise difficult ethical questions in their own right. For these reasons, we argue that Krabbe screening should only be (...)
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  • Religion and Newborn Screening.Richard H. Dees & Jennifer M. Kwon - 2016 - American Journal of Bioethics 16 (1):20-21.
    Hom and colleagues (2016) argue in favor of allowing religious exemptions to congenital critical heart disease (CCHD) newborn screening, but the logic of their position is at odds with the moral ju...
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