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Currents in Contemporary Ethics: State Run Newborn Screening in the Genomic Era, or How to Avoid Drowning When Drinking from a Fire Hose

Published online by Cambridge University Press:  01 January 2021

Ellen Wright Clayton
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Extract

Parents, providers, policy makers, and the public need to talk about the implications of advances in genomic technologies for state run newborn metabolic screening programs. Technologies, such as highly multiplex testing and whole genome sequencing, are raising old issues with new urgency and are posing new challenges that threaten to overwhelm newborn screening programs.

Newborn screening programs in their current form were born in the late 1960s. Robert Guthrie developed a screening test for phenylketonuria (PKU) that could be performed on blood spots collected on filter cards that Guthrie also developed. States rapidly established newborn screening programs, which were almost always mandatory, in response to advocacy by geneticists and parents. Although the programs initially varied in form and experienced significant pushback from the medical community, by the early 1970s, all states had established programs with centralized laboratories, and the medical community had come on board.

Type
JLME Column
Information
Journal of Law, Medicine & Ethics , Volume 38 , Issue 3 , Fall 2010 , pp. 697 - 700
Copyright
Copyright © American Society of Law, Medicine and Ethics 2010

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References

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