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    Unwinding the Ethical Concerns of Newborn Screening in the Age of Genomic Medicine

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    Genre
    Thesis/Dissertation
    Date
    2020
    Author
    Dayno, Allie
    Advisor
    Strand, Nicolle K.
    Committee member
    Rocco, Providenza Loera
    Department
    Urban Bioethics
    Subject
    Medical Ethics
    Genetics
    Newborn Screening
    Urban Bioethics
    Permanent link to this record
    http://hdl.handle.net/20.500.12613/2763
    
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    DOI
    http://dx.doi.org/10.34944/dspace/2745
    Abstract
    The thesis begins by examining the history of the newborn screening (NBS) process in the United States and why it is the way it is today. The next section explores why certain genetic conditions, such as Long QT Syndrome (LQTS), do not fulfill requirements for the recommended uniform screening panel (RUSP). Lastly, ethical considerations of expanded NBS in the age of genomic technology are examined by highlighting the principles of autonomy, beneficence, equity, cost-effectiveness, privacy and trust. Overall, the NBS process benefits children by identifying serious rare diseases and intervening early to prevent harm; however, a deeper ethical analysis highlights some of the concerns with expanding mandatory, universal NBS in the age of precision medicine. The focus must be on educating the public and healthcare professionals about the NBS process and using evidence-based protocols for adding new conditions to the panel.
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