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  1. Families’ Experiences with Newborn Screening: A Critical Source of Evidence.Rachel Grob, Scott Roberts & Stefan Timmermans - 2018 - Hastings Center Report 48 (S2):29-31.
    Debates about expanding newborn screening with whole genome sequencing are fueled by data about public perception, public opinion, and the positions taken by public advocates and advocacy groups. One form of evidence that merits attention as we consider possible uses of whole‐genome sequencing during the newborn period is parents’ (and children's) diverse experiences with existing expanded screening protocols. What do we know about this experience base? And what implications might these data have for decisions about how we use whole genome (...)
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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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  • Newborn Screening for Krabbe Disease: What Illinois Can Learn from New York.Lainie Friedman Ross - 2013 - Public Health Ethics 6 (1):119-123.
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  • Krabbe Newborn Screening: The Issue of Informed Consent.Niels Nijsingh - 2013 - Public Health Ethics 6 (1):126-128.
    In their article, Dees and Kwon (2013) describe the case of newborn screening for Krabbe disease and argue compellingly that a mandatory newborn screening program for this disease is problematic in several respects. Therefore, they submit, testing on Krabbe disease should only be offered on a voluntary basis, under a research protocol. In my opinion, Dees and Kwon are correct to point out the problematic character of a mandatory screening program for Krabbe disease. Their move toward a research paradigm is (...)
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