Mandatory versus voluntary consent for newborn screening?

Kennedy Institute of Ethics Journal 20 (4):299-328 (2010)
Virtually every infant in the United States (U.S.) undergoes a heel stick within the first week of life to test for a variety of metabolic, endocrine, and hematological conditions as part of state-run universal newborn screening (NBS) programs. In the U.S., NBS began in the 1960s for phenylketonuria (PKU), a metabolic condition that causes intellectual disability if left untreated. I review the history of how NBS came to be a mandatory public health program that did not require parental consent1 and examine whether the policy was morally justifiable. I then examine how three changes to NBS programs are prompting a re-evaluation of the mandatory nature of NBS. The three changes are: (1) the implementation of ..
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Diane B. Paul (1994). Toward a Realistic Assessment of PKU Screening. PSA: Proceedings of the Biennial Meeting of the Philosophy of Science Association 1994:322 - 328.

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