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  1. The Use of Newborn Screening Dried Blood Spots for Research: The Parental Perspective.Li-Ming Gong, Wen-Jun Tu, Jian He, Xiao-Dong Shi, Xin-Yu Wang & Ying Li - 2012 - Journal of Bioethical Inquiry 9 (2):189-193.
    ObjectiveTo investigate the attitudes of Chinese parents regarding the storage of dried blood spots collected for newborn screening (NBS) and their use in research.MethodsWe conducted a hospital-based survey of parents and examined parental attitudes regarding (a) allowing NBS sample storage, (b) permitting use of children’s NBS samples for research with parental permission, and (c) permitting use of children’s NBS samples for research without parental permission.ResultsThe response rate was 52 percent. Of parents surveyed, 68 percent would permit their infant’s NBS sample (...)
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  • Fostering caring relationships: Suggestions to rethink liberal perspectives on the ethics of newborn screening.Simone van der Burg & Anke Oerlemans - 2018 - Bioethics 32 (3):171-183.
    Newborn screening involves the collection of blood from the heel of a newborn baby and testing it for a list of rare and inheritable disorders. New biochemical screening technologies led to expansions of NBS programs in the first decade of the 21st century. It is expected that they will in time be replaced by genetic sequencing technologies. These developments have raised a lot of ethical debate. We reviewed the ethical literature on NBS, analyzed the issues and values that emerged, and (...)
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  • (1 other version)Sequencing Newborns: A Call for Nuanced Use of Genomic Technologies.Josephine Johnston, John D. Lantos, Aaron Goldenberg, Flavia Chen, Erik Parens & Barbara A. Koenig - 2018 - Hastings Center Report 48 (S2):2-6.
    Many scientists and doctors hope that affordable genome sequencing will lead to more personalized medical care and improve public health in ways that will benefit children, families, and society more broadly. One hope in particular is that all newborns could be sequenced at birth, thereby setting the stage for a lifetime of medical care and self‐directed preventive actions tailored to each child's genome. Indeed, commentators often suggest that universal genome sequencing is inevitable. Such optimism can come with the presumption that (...)
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