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Parents seen as critical stakeholders in expanding newborn screening
Date:6/20/2012

The first tier could include mandatory screening for conditions with established therapies and consensus on when treatment is necessary. A second tier, designated to less understood diseases, could be offered under a research protocol with active parental consent. This model was adopted by the Massachusetts Department of Public Health with the expansion of its newborn screening program in the 1990s.

Waggoner and Ross acknowledge that large-scale screening initiatives are needed to uncover the many unknowns regarding LSDs, yet they strongly oppose policies that allow research studies to operate under the guise of public health programs.

"The development of enzyme replacement and other innovative therapies for many LSDs is exciting and motivate the pursuit of IRB-approved research on populations that may benefit from early identification and treatment," Ross said. "But infants are vulnerable and need their guardians to determine whether participation is in their best interest. Let's give voice to all parents by requiring their permission for the enrollment of their children in experimental newborn screening protocols."


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Contact: Tiffani Washington
tiffani.washington@uchospitals.edu
773-702-5865
University of Chicago Medical Center
Source:Eurekalert

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